Harmony prenatal test - anyone know about it

(821 Posts)
RTchoke Mon 29-Oct-12 05:41:25

today I am having a new kind of prenatal test called Harmony. It's non-invasive and seems to just be a new kind of blood test plus the regular nuchal scan but it's much more accurate than the traditional nuchal blood test. Apparently it's nearly as accurate as a CVS but without any risk.

I'm the only person I know who is having this test and nobody else seems to have heard of it let alone have been offered it. I just wondered if others have and knowledge of it and how accurate it is.

griphook Mon 29-Oct-12 19:37:15

Never heard of it, how did it go?

RTchoke Mon 29-Oct-12 20:20:23

Thanks for asking Griphook. I had a quick scan to confirm dates and then a blood test which you have to have between 10-11 weeks. They send the blood to California where they test it for free particles of the baby's DNA. Apparently it's almost fool proof for detecting Diwns and Edwards put they still recommend you have the nuchal to look for other things.

Apparently they expect the NHS to ppt fur this test in four it five years but the question will be whether it's just for high risk or all pregnancies.

Part1 Mon 29-Oct-12 20:25:22

Sounds amazing. Where did you have it done? Are you part of a trial, if you don't mind me asking?

RTchoke Mon 29-Oct-12 20:58:43

I had it done at a place called the Fetal Medicine Centre on Harley St. It's run by a man called Prof Nickolaides who invented the nuchal scan. Trials have been done but they want more clinical data so it no extra cost on top of the normal nuchal scan cost there at the mo.

lotsofcheese Tue 30-Oct-12 20:20:39

Thanks for sharing the information, it's really interesting. I'd love to have the test myself, but it sounds like it's not widely available yet.

Are you part of a clinical trial, OP? I wonder if that's why you weren't charged? Would be interested to hear how much it cost?

Sorry for so many questions!

Monkeroon Tue 30-Oct-12 21:10:40

I went to holland in July to have a similar non invasive test done called materniti21. Works in the same way, a simple blood test so no risk of miscarriage. It cost about £950 + airfare to Amsterdam. They send your blood to America to check the fetal DNA in the mothers blood. There was a 2 week wait for the results. So glad they are doing it in the uk now. The fetal medicine centre is excellent.

RTchoke Tue 30-Oct-12 21:58:26

I'm not part of a trial but they are collecting data. I paid £180 for a nuchal scan at the FMC and for the time being this Harmony test is a free optional extra.

peiw Sun 04-Nov-12 17:24:42

Hi RTchoke I had my nuchal scan and blood test last Thursday and found that even though my the measurement was quite low, around 1.2mm my blood test shows that I had low papp-a and hence my risk came to about 1/250 sad I'm considering going to the FMC for another scan to confirm. Can you tell me if they do the similar combination of nuchal scan and blood test (similar to NHS) as well?

That's nice that they are offering Harmony test as free extra, wonder if you know how long the offer is for? I heard that it's 99% accurate!

RTchoke Sun 04-Nov-12 17:45:21

Hi Pelw,

Sorry to hear you got a high risk combined test result. Since posting o had my NHS nuchal and found the baby has a nuchal measurement of 3.2mm which is quite high. I don't know my risk yet as I await my blood results but I'm going to the FMC to ask them to do the combined test and get my Harmony results.

In your position I'd definitely go to the FMC. The cost of the combined test there is £180 but they look at so much more than NHS scans. With my DC2 I got a high nuchal reading (3.1mm) but the FMC assessed my risk as only 1 in 5500 (down from 1:45 from the nuchal alone). They look for all sorts of scan indications for the triangles like curvature of the face, blood flow in the liver, structure of the heart and even number of little finger joints (Downs syndrome often results in only one little finger joint).having taken all that into account the give you a revised risk indicator. I found it so reassuring last time and I will again this time. Just remember you need to get there before you are 13+6, after that they can't measure the nuchal.

I feel for you as I'm going through similar. I'm so glad I had the Harmony but it's another 8 days til the results come back from the US and right now that wait feels like forever.

Good luck and let us know how you get on.

RTchoke Sun 04-Nov-12 17:47:09

Sorry for the typos. "Indications for the triangles" should have read "indications for the trisomys"

peiw Sun 04-Nov-12 19:06:59

Yeah I understand what you mean. DH and I are considering of getting an amnio but worried with the risk involved and the wait time till 16wks will feel forever!

Thanks or detailed description of what fmc checks.

Why are u going back to fmc for another combined test? I assume 'combined' means nuchal + blood test as what offered in NHS? From reading your earlier posts, I thought you had the nuchal scan there already and with the harmony test, it would be even more conclusive?

RTchoke Sun 04-Nov-12 20:07:23

With Harmony you have a blood test between 10 and 11 weeks and at that point you have a quick scan to confirm dates. That's what I had last Monday.

Then you go back 12-14 days later to get the Harmony results and have the nuchal scan and combined bloods results. You have a nuchal scan as well as Harmony because although Harmony is near conclusive for chromosomal disorders it wouldn't pick up heart problems or other non chromosomal structural problems that the nuchal can pick up. I will have the nuchal & Harmony results next Monday.

peiw Sun 04-Nov-12 21:59:28

Thanks for the clarification. Im 13 wks tomorrow guess might be late for Harmony now. Will still call them to check tomorrow - maybe just for nuchal scan for a second opinion. I wonder if its easy to get an appointment there? Hope your week wait goes by quick and fingers crossed everything goes well for u RTchoke.

VioletElizabethBott Sun 25-Nov-12 16:11:41

Hello - Just checked on Mumsnet to see if anyone had heard of the Harmony test as I just had mine done at the FMC as well. I'm an older 2nd time mother (38) and paranoid about Down's risk so was considering a CVS if my nuchal fold test at 12 weeks made me nervous in any way.

The FMC offered me (rather cryptically at the time) "a blood test" at 10 weeks but when I got there explained more fully and gave me the name of the test (if you google Harmony Testing you'll get all the information - seems like it is now common in the States.)

My results came back two days ago with a 0.01% chance of the three trisomys (apparently the test is 99% accurate) which is a huge uplift and I've cancelled my CVS (I'd booked it as soon as I knew I was pregnant because I wanted Professor Nicolaides to do it, if anyone was going to.). I'm going to my 12 week scan next week at the FMC (like RTchoke I paid £180 for the scan and the Harmony blood tests were offered free).

I would recommend the FMC to anyone - I used them last time and the level of care and attention given during the scans, coupled with the fact that you get the results the same day, is just incredible. The staff are fantastic, the centre a touch of luxe (! after the NHS for everything else!) and most importantly you know you are in the best hands. I think if you are fortunate enough to be in London and are being seen on the NHS at King's you get the same team, led by Professor Nicholaides.

While not diagnostic, unlike CVS and amniocentisis, the 99% accuracy (sometimes given as 99.9% accuracy depending what you read) is a pretty amazing scanning tool.

I think Professor Nicolaides is campaigning to get the NHS to pick up the Harmony test nationwide. He also spearheaded the nuchal fold test (which I think I'm right in saying he developed) being rolled out across the country.

Love to know how you get on peiw and RTchoke. Best of luck.

countrymumkin1 Wed 05-Dec-12 15:15:40

Hello all.

I have posted this on a couple of other threads, as thought it might be useful. VioletElizabethBott suggested I also post here in case my experience would be helpful to people.

I had a very worrying combined screening results (1 in 33) with 2.1mm nuchal (seen as pretty normal), normal PAPP-A but extremely high HCG (4.4 times average). At age 40 and after a hell of a journey getting pregnant (2 failed IVFs, 4 failed clomid cycles), I had success with a combination of Chinese Medicine, acupuncture and a diet to support my Chinese Medicine diagnosis. We really didn't want invasive testing and my husband found out about Harmony test online after much desperate searching.

The Harmony test is non-invasive, is just a simple blood test and the reliability is extremely high (you wouldn't need to worry at all about reliability). We had the Harmony test and scan 2 weeks ago and I am pleased to say that all went well and the results were fine. This post is just to really say 2 things.

1. If you don't want the invasive tests, call up the Fetal Medicine Centre for a Harmony test (you won't find it advertised on their website as it has only been available for 4 weeks or so). It's only available privately and costs £400 + £150 for scan (you have to have a scan on same day). They are the best in the country and Professor Nicolaides who runs FMC is one of the top Fetal Consultants in the world.

2. We found the waiting for the tests results extremely traumatic. It takes 2 weeks and we went to hell and back. I shouldn't think we'll ever be the same again! I know everyone says stay off the internet, but it's very hard to. You're looking for 'someone like me' who's come off ok or for some nugget of insight in a medical report. One great thing we did find whilst googling was the www.arc-uk.org They are Antenatal Results and Choices and offer really good unbiased counselling over the phone- I really found it helped. They don't favour any way of thinking, so are ideal if you want someone to talk to.

Hope some of this helps someone that comes onto this board or is on the board already.

Best wishes to you all.

VioletElizabethBott Wed 05-Dec-12 19:23:52

Thank you! There are very few discussions going on about the Harmony test so it's great you've posted your experience here too. all best!

RTchoke Thu 06-Dec-12 16:58:48

I realise I never updated this thread (although I did start other threads on these boards). To help those trying to garner info on Harmony I will post my full story now.

So last time I posted I had been given a 1:10 chance of Down Syndrome following my NHS scan. I could not understand why the risks were quite that high. The baby's nuchal was 3.2mm but by PappA was normal at 1.1 MoM and my HCG was normal at 0.9 MoM. Is 3.2mm enough to give a 1:10 risk and if so what point are the bloods? I am 34.

I went to the Fetal Medicine Centre (FMC) to receive my Harmony results and repeat the combined test (I cannot express how lucky I feel that we chose to have the Harmony before we knew the terrible NHS results). My Harmony results cam back very low risk: less than 1:10,000 for all three common trisomies. The FMC repeated the combined test and could not replicate the NHS nuchal measurement. They measured it 20 times and the thickest measurement was 2.4mm. All other markers were normal and my bloods were the same so I got a revised combined test result of 1:6500. I have never felt so relieved in my life.

I wish I had left it there but the HNS screening midwife kept calling and asking if I wanted an invasive test. She repeatedly warned that the FMC methods were more experimental and did not have the backing of NICE and the NHS. She made me begin to doubt both Harmony and the FMC nuchal result. I could not get the 1:10 out of my mind. Eventually she referred me to an NHS foetal medicine consultant. That consultant was more positive about the Harmony test saying that although it was new it was not experimental. He re-measured the baby's nuchal and it was 2.7mm (why does the damn thing not stay constant????). He did not re-do my bloods or give me a new risk based on 2.7mm. He said all the signs were promising but nothing but a CVS or amnio could guarantee that the first combined test was a false positive.

This is where I have left it. I am 17 weeks now and have not had an invasive test. I still have shaky days where I need certainty and then I have days where I feel total confidence in the Harmony result and the FMC combined result. I will have my 20 week scan at the FMC and if there is a shadow of a hint of a problem then I will have an amnio then.

katiecubs Fri 07-Dec-12 09:12:49

Hi RT.

Both bloods and increased NT can up your risk figures on their own - sometimes the NT is low but bloods flag a problem and vice versa. Differant trusts have differant cut off levels for what is high risk but from what i know anything above 2-2.5mm can increase your results quite considerably. However that said 3.5mm is often is the cut off of the 'normal range', albeit on the high side - i do think a risk of 1:10 considering your bloods were pretty perfect sounds high.

I'm really glad you got better results through the FMC, i have not been there myself but know of many people who have and speak very highly of it. As Prof N. developed the combined test himself i would be much more inclined to go along with what they say. Your risk figures from there are fantastic and i'm sure you have nothing to worry about at all.

Best of luck and enjoy the rest of your pregnancy!

BadMissM Fri 07-Dec-12 22:17:16

Does anyone know if the FMC is the only place in the country offering this? (As I'm at the other end of the country), or are other clinics doing this too? I'm 45 and pregnant with bad experiences of amnio in the past, but having to factor in 2 x trips to London will bump the cost up enormously....

lily06 Sat 08-Dec-12 19:01:05

Yes, at the moment the FMC is the only place offering harmony. I'm travelling down on Monday and the train fares are costing me more than the clinic fees. I feel it is worth it as we terminated for downs last year and I think otherwise we would end up going for cvs or amnio this time to be sure even if the nhs scan came back low risk. I'll post back and let you know how we get on.

lotsofcheese Sun 09-Dec-12 08:53:22

Hello again RT just to say that I had an amnio on Monday, on the NHS - and initial results back within 24 hours. My worries & fears about the test were definitely worse than the reality. I agonised about it, as I've had two miscarriages & this is my last go at pregnancy. But it has been the right thing for me.

Hoping everything works out for you x

BadMissM Mon 10-Dec-12 10:52:39

lily06 Yes, I ummed and aaahed about it, as the train fares are more than the test and mine falls on New Year's Eve!! But I just think as I'm 45 it will put my mind at rest. I am so scared of the invasive tests, I had a badly botched amnio in France 15 years ago, on a faulty blood test result. I lost the baby.

I have now booked the 2 appointments at the FMC and the trains (owch), and just have to wait for it now! I can't afford for anyone to go down with me either.

RT It's mainly because I have no confidence in the maternity services around here that I am going to do it... Many of the reasons for last miscarriage were down to them....

lotsofcheese Yep, decided to go for it though it means Christmas is largely cancelled at our house....but I just can't take the chance at my age....

Will let you all know how it goes...

lily06 Mon 10-Dec-12 18:43:01

BadMissM I'm just on my way back and they were fabulous. My scan was 30 mins and that was just the viability one but they did nuchal and blood flow etc just as they will when we go back again for the full 12 week scan. They are so knowledgable and there's the opportunity to ask as much as you want to.

I've just booked train tickets for the second scan that came in at £235 - ouch - but I think it will be worth every penny even though the whole costs are more than I earn in a month.

I'm not sure now whether to still go for the nhs scan or whether that will confuse things.

BadMissM Wed 12-Dec-12 12:07:57

Hi Lily06 I'm glad to hear it as because of cost again I have to go by myself for it all.... Was a little nervous....!

I actually managed to get tickets on trainline.com for less. Mine should have been £174 x 2 but managed to get them for £54 x 2 but have to travel on odd days at insane times....

I'm still going for the NHS scan out of pure curiosity I think....

BadMissM Wed 12-Dec-12 12:08:45

Lily06 you must be even further away than I am! smile

countrymumkin1 Wed 12-Dec-12 16:42:13

BadMissM I am sure you will find the FMC really reassuring, it's so worth it.

Lily06 Pleased you find it went well, I will be thinking of you whilst you are waiting for your results. If you need to talk to someone whilst you wait, these people are excellent and they are totally unbiased www.arc-uk.org

RT I really feel for you that your midwife has made you feel this way. I have to say the person that told us about our NHS combined test (not our usual midwife), seemed to imply this, but when I probed her (am good at doing that I work in research!!), it turns out she didn't know anything about it. She even implied I was too late to have it at 14 weeks, which is rubbish, she just didn't have the facts and was just trying to be 'expert/authoritarian' about it, because she was the midwife and I was the patient. I have spoken to quite a lot of more senior medical people re Harmony and read lots about it and I am convinced it's extremely well-researched. My risk was 1 in 33, and my Harmony results came out the same as yours. I am sure you will be fine. I have been a terrible worrier throughout this pregnancy, so know what that can feel like, but the Harmony test and results came as such a relief. I do still worry, but not about Downs, I am totally convinced about the effectiveness of Harmony, I just get paranoid about other things. Who'd have thought pregnancy was so stressful?! Next week I am due to have my 20 week scan (I'll be 19+4) with the NHS and I am also going to have a 22 weeks scan at FMC, just because they are so thorough. I'll update then.

Thinking of you all.

xx

BadMissM Thu 13-Dec-12 09:07:45

CountryMumKin I hope so, am a bit nervous.... my midwife knew nothing about the Harmony Test, but my GP did, and thought it was a brilliant idea and only wished they could offer it on the NHS.
Am having first NHS scan today (because of age/risk)

I will be interested to see what the NHS tests come up with, tbh....

VioletElizabethBott Thu 13-Dec-12 19:49:51

Hello - I thought I'd join in again as I've just seen my NHS obs consultant and asked him about the Harmony Test (see above, I had it at 10 weeks at the wonderful FMC). I was the first woman he'd seen who had had the Harmony test but he knew about it. His opinion was that it was 'almost' diagnostic but still officially a screening test.

He said (and bear in mind he's only had one briefing on this subject, he's not an expert on the test as they will be at the FMC) that there 'can' be difficulty identifying the correct fetal cells they get from the mother's bloodstream as fetal cells persist in the mother after birth, miscarriage and if there's been an undetected unsuccessful twin pregnancy (ie one of the two embryos the mother is carrying has miscarried (often due to abnormality) but the other twin is the 'singleton' pregnancy still valid. Maybe ask the Fetal Medicine Centre about this? I didn't glean how long the 'wrong' fetal cells can persist in the mother's blood stream and I'm sure the FMC have all this under great scrutiny but it sounded worth asking about.

I know they cannot offer the Harmony Test for twin pregnancies so if you are travelling a great distance it might be worth seeing if you can get a local scan to just ensure you aren't carrying twins before you go to the trouble and expense of the journey?

lily06 - I personally wouldn't bother with the NHS scans for 12 weeks if you are doing the FMC. I did both in my first pregnancy and the NHS machines were noticeably simpler and the test much less detailed (this may not be the case for all NHS trusts, for instance I know King's has the same equipment as FMC) compared with the FMC's up-to-the-minute technology. The NHS nuchal fold results were significantly worse than the FMC's and just worried me when they should not have as the time spent/equipment used/experience of the ultrasound doctor was greater at the FMC.

ps If it makes the cost seem more justifiable, apparently the machines they use to test the blood cost over £1 million each! Plus obviously the present cost of couriering the blood to America. The FMC is also non-profit - any money made over costs goes back into medical research.

lily06 Fri 14-Dec-12 07:41:50

VioletElizabethBott that's an interesting point, and as someone with a previous t21 pregnancy also very relevant. Have a look at http://www.ncbi.nlm.nih.gov/m/pubmed/12640544/ which I think was trying to establish whether this is the case. The study though doesn't say how long after the previous pregnancies the samples were taken.

BadMissM I'm glad you're all sorted for going down and I'm sure you'll find them as lovely as I did. While I was there a couple arrived who had travelled over specially from Lapland!

I've decided to keep the NHS scan appt which is on wed, but only because I don't want to end up nog in their system. I have already decided to largely ignore the results though and go with what the FMC give me instead - hoping that's not easier said than done!

Cetacean Fri 14-Dec-12 18:03:19

Hello all...I just found this thread. I also had the Harmony Test last week at the Harley Street Centre for Women. It cost £400 plus around £30 for taking the blood sample. While I was there they did do a scan as well to check the size of the baby as apparently they need to be at least a certain size. The Consultant had a quick look at the baby as well for free and measured the nuchal fold. However if the FCM is doing it for free for anyone doing the combined test, it seems a lot better to go to the FCM.

My understanding is also that it can be done at any time from 10 week onwards. It is not restricted to 10 to 11 weeks.

I am waiting for my results now. Hopefully all will be fine.

Lots of good luck to everyone waiting for their results!

BadMissM Fri 14-Dec-12 19:58:03

waiting with baited breath now for the 31st..... have had NHS scan to check all in right place (as am old!) and know is singleton, so can go ahead with FMC.... everyone so far has said they are lovely!

ArtigeneAuberchoke Fri 14-Dec-12 20:49:49

Just caught up with this thread. I wish everyone good luck with their results.

Countrymumkin - we are in v similar positions. In having my 20 week scan at FMC as I need to feel free to ask loads of questions and I haven't felt that freedom with my NHS team. The FMC scan in on New Years Eve, I am very nervous, today I suddenly wished we'd had an amnio. I have to hold faith with my Harmony results, most days they give me huge reassurance but I do have wobbles.

BadMissM Sat 15-Dec-12 02:13:08

Artigene I'm in on NYE too, for the first scan/Harmony Test part. What a day to travel up and down the country....

ArtigeneAuberchoke Sat 15-Dec-12 07:59:53

We will probably cross paths BadMissM. I think the FMC is only open in the morning that day. The pre-Harmony scan they do is surprisingly long and detailed which was an unexpected bonus for me.

I've just realised I've name changed since starting this thread. I'm RTchoke by the way.

BadMissM Sat 15-Dec-12 11:00:27

Artigene Probably! My appointment is 12.00 on the nose, as I have to get there from 300 miles away. I can't even bring anyone with me, as the train fares are so prohibitive....

cath888 Sat 15-Dec-12 11:52:39

Morning

Just found this thread after looking through google. Had my 12 week scan last week. Come back as high risk again. Our son was also high risk 1 in 5, 20% chance of downs. Had cvs and everything was okay.

This time. NF measurement was 2.2mm. 1 in 120. Less than 1% chance of downs. Now have amnio booked in for 2nd Jan. Really worried about the miscarriage risk as had a mc in July. Never want to go through that again.

Just been told about this harmony test. It seems from this thread there is nothing but poistive things being said. I am 13+6 Tuesday 18th Dec. Is it to late for me to get this done. Would they be able to see me this week if I called Monday.

Any advice would be much appreciated. Thanks

ArtigeneAuberchoke Sat 15-Dec-12 17:20:27

Cath - I think you can have the Harmony test at any point. If you get there before 13+6 then the FMC will also repeat your combined test taking into account factors such as presence of nasal bone, the flow through the venous ductus valve and other things, based on that they'd give you a revised combined risk score at the same time as Harmony. Call them first thing, they may have a cancellation. Good luck!

BadMissM Sat 15-Dec-12 18:29:58

Cath, just ring them, they were really sweet with me and fitted me in over awkward Christmas period

cath888 Sat 15-Dec-12 19:49:13

Thanks Ladies. Will call them first thing Monday. Really hope I can get this done. Was everything okay with you both?

BadMissM Sun 16-Dec-12 11:01:51

I'm off to see them on 31st for test...so don't know yet....

VioletElizabethBott Mon 17-Dec-12 12:50:04

Do call them - they are hugely helpful and it is not too late to have the test.

cath888 Mon 17-Dec-12 20:54:40

Hi. Thanks for replies. I called them today. They gave me the statistics of the answer from test. Either over 99% baby has downs or under 0.01% no downs. Is that what everyone else was told?

They also told me invasive test are 100% conclusive of results. This test is over 99% accuarate.

Got appointment tomorrow Tuesday 18th at 6.30pm. Bit late but only 70 mins train ride from London.

Bit worried that I will still have any niggling doubt of baby might have downs when we get results back but if we can avoid having an invasive test then thats the way I want to go.

Does the consultant talk to you lots about it?

Would they be very decisive in their response i.e they could categorically say baby has not got downs or would they be unsure and recomend that anyway?

Its costing £580. My parents are paying but I feel so bad about that.

Thanks

ArtigeneAuberchoke Mon 17-Dec-12 21:27:06

Cath - my NHS combined result was a 1:10 risk of Downs. The FMC re-did my combined test at the same time as Harmony. They take account if additional factors in their combined screening and my risk went down to something like 1:5000. Then I got my Harmony results which were 1:10000.

The consultant told me the Harmony results are 99% accurate and I asked for some study references. I've looked at all the studies I can find and have not found 1 which missed a Down Syndrome diagnosis in a single patient. Several gave false positives and I wonder if the
false positives account for the 1% error rate. I don't know that but it's
what my research suggests (and what I hope!).

My FMC consultant spent ages answering questions and I felt very reassured. I had no soft markers on their advanced version of the combined test abd a 1:10000 result on Harmony, the consultant said that based on that she saw no reason for an amnio. However I don't
think they can give you a categorical answer without an invasive test so I would not hold out hope for that. As you will see from my previous posts I have days of doubt where I long for certainty and am haunted by my original 1:10 result.

Good luck tomorrow.

peacefuleasyfeeling Mon 17-Dec-12 23:23:09

Oh, I cannot tell you how grateful I am to have found this thread. I will make some calls in the morning. Thank you, Universe!

pyjamas2 Wed 19-Dec-12 20:59:45

Hi glad you've all had good experiences at fmc, I'm going tomorrow for first part of harmony test, will be 10 w 5 days, apparently the baby has to be at least 35 mm, I was booked in for last mon but they didn't think it would be big enough. I hope it is the right size tomorrow, also travelling from ages away by train so hope don't get delayed. Look forward to hearing how everyone gets on x

lily06 Wed 19-Dec-12 21:13:08

Hello ladies,

It's lovely to have this thread running at the moment, it makes me feel a little less alone, and I hope it does the same for you all too.

I had my NHS scan today and they will phone me with the results hopefully Friday. My scan at the FMC is late on Friday when I should also get the harmony results, so hopefully I will have all the information by the end of the day. I've managed to busy myself with other things over the past few weeks but today it is all I can think about. Strangely it's not the fear of having to go through another CVS or even termination but the thought of the future and not having children. It took 10 months of fertility treatment to conceive this time and I'm not sure I could go through it all again.

Sorry for the negative post tonight. Good luck to everyone having tests and scans.

peacefuleasyfeeling Wed 19-Dec-12 21:53:29

The very best of luck, lily, and congratulations on your pregnancy.

lily06 Thu 20-Dec-12 13:59:03

Thankyou peaceful

My NHS results are back already and low risk at 1:22603, which I can't quite believe. I'm alternating between feeling elated and wanting to ring them back to double check. I think I'll hold off telling anyone until we've had the full results from the FMC tomorrow though.

Keeping everything crossed for everyone else x

pyjamas2 Thu 20-Dec-12 15:09:53

Wow lily that is an amazing result will be interesting to hear how fmc compares.

I went down today for harmony test, have to go back on 2 jan for results and nuchal, it's just under 2 weeks, has anyone else's come back before 2 weeks, don't want to reschedule as have to book trains, they also said on a wed you might have to wait a long time to see the prof, how long have you waited? Was impressed with them today but don't know anything, did anyone find out gender at 10 or 12 week scan? They told me last time at 12 weeks and were right x

BadMissM Thu 20-Dec-12 18:09:14

Oh * Lily* that's great! I know what you mean though. I'm 45 so for me this is last chance time....

pyjamas have the same problem, am 3 hours by train+ from London....so hope I don't have to reschedule anything....

ArtigeneAuberchoke Fri 21-Dec-12 07:29:40

Lily - I've never heard of such a low risk score, that is amazing. Good luck at the FMC today.

Pyjamas - my Harmony result came back about 6 days early, the FMC called and told me the results but didn't ask me to bring my appointment forward. I found out the gender with than at 12 weeks with both my girls and this time they said it's a boy! Over never been offered a consultation with the Prof but then I had Harmony before they charged for it so maybe the Prof is part of what you pay for. The other consultants were so experienced and knowledgeable that I never thought to ask for the Prof.

9 days until our anomaly scan. I'm still nervous and haunted by our original 1:10 result.

pyjamas2 Fri 21-Dec-12 13:14:06

Thanks ARtigene what were your results on harmony? Are you having the anomaly at fmc too? I wish my results would come in early but with Xmas and new year they might not. I guess I'll try and forget about it now but won't be able to!
Let us know how anomaly goes x

BadMissM Fri 21-Dec-12 18:21:14

How did it go lily? Hope all went well!

lily06 Sun 23-Dec-12 18:52:21

It all went fine, thanks for asking, and thanks for the good luck wishes too.

They didn't give me a combined risk, but the harmony came back low risk (<1:10,000) for all three trisomies and the scan didn't show any of the other markers and the sonographer seemed happy with everything that she could see.

For those that were asking, it was only 11 days since the harmony blood test, and though they were careful to say when I booked the second appt for less than 14 days away that the results might not have been back in time, obviously they were, so hope that sets minds at rest. They did say that if the results hadn't been in they would still have scanned and done results based on other bloods and phoned when the harmony result came in.

The clinic was lovely again, so helpful and thorough. I wish I was going back for my 20 week scan too, but out of the question due to the distance and cost of train fares etc. I think if I had a problem though I would definately pay the extra and go there for a second opinion. Their machines and their expertise are far superior to our local hospital.

They didn't mention gender, and as it turns out, DH has said he doesn't want us to know anyway! I'm a bit disappointed as I feel it would help me bond, but in a way he's probably right that it will be nice to have a surprise and might help me stop planning everything down to the very last detail.

We still haven't told anyone yet, it doesn't feel real to me and I want time for it to sink in a bit I think.

BadMissM are you the next of us here to go for an appt there?

BadMissM Sun 23-Dec-12 19:06:51

Hi Lily It does sound fantastic. I'm so glad it all went well for you, and I bet you are feeling relieved!!! I wish I could go there for the 20 week as well, but like yourself am held back by distance and train fares.... but again, like you, think I would probably go back if had a problem...

I think I am the next one up, am there on the 31st along with Artigene. Then am back on the 14th for results and Nuchal Scan. Luckily, on the 14th my BF who lives in London is coming with me (mainly because she's really curious to see scan...) but at least it means I'm not having to go by myself (as DH at work and stupid train fares mean too expensive for both of us to go...)

Oh gosh, can't wait to know gender....I would be too excited to keep that to myself. I couldn't prevent myself planning either!

iclaudius Sun 23-Dec-12 21:13:13

Do you HAVE to actually go there for the bloods - at my ( northern) nuchal place they allow me to post the bloods to them?

BadMissM Mon 24-Dec-12 18:48:48

I don't know iclaudius . I'm in the north as well and couldn't find anywhere to do it which is why I'm going to FMC...

pyjamas2 Tue 25-Dec-12 20:54:36

Glad it went well lily

I'm going back on 2 jan for second part of harmony

Had nuchal yesterday on NHS don't have blood results yet but they said nuchal measurement was 1.3 mm and crl 50 mm. Hope this is ok?

I didn't realise the harmony gave you a number I thought it was either positive or negative.

Hope everyone had a good Christmas x

BadMissM Wed 26-Dec-12 22:09:30

pyjamas Good Luck!

pyjamas2 Mon 31-Dec-12 14:17:30

Hi got harmony results today less than 1 in 10000 so I guess that is good!

holldoll Mon 31-Dec-12 14:39:48

Hi all, I'm due the first part of harmony on the 3rd jan. wanted some advice about whether you guys have also had an nhs nuchal scan too? I know that FMC is cutting edge but I guess I'm just a bit worried because its not nhs! Silly as I know the prof there is based at Kings College.
Thanks for any reassurance and its great to hear all the positive news on here

ArtigeneAuberchoke Mon 31-Dec-12 14:58:24

Hi All

Went to the FMC today for 20 week scan. Before the start I explained to the doc that I had never been able to relax because although I wanted to trust the Harmony result I have been unable to forget the NHS combined 1:10 result. The doc was amazing. She said that for Downs Professor Nicolaides believes a false negative is impossible and therefore she could basically guarantee our baby doesn't have Downs.

She then did a very detailed 45 minute scan and checked everything. The baby's heart looked great and there were no soft markers for chromosomal abnormalities. She advised us to utterly relax and have confidence that this baby is developing normally. I felt so reassured and I feel I understand Harmony a lot better. She said there is no danger Harmony could gave been assessing my DNA or a previous child's DNA, those are rumours I'd heard and she utterly and convincingly rejected them.

Good luck everyone. BadMissM I hope your FMC visit went well.

ArtigeneAuberchoke Mon 31-Dec-12 15:04:05

Sorry Holl, I forgot to answer you. The FMC scans are better than most NHS scans. They are carried out by very experienced doctors with state of the art machines. As you say Prof N runs the unit at Kings and many FMC sonographers work in the NHS too. I would not get an NHS scan as well, I did and I regretted it as the NHS scan gave very different results which terrified me. When I asked the NHS consultant to explain the difference in the NHS combined result and the FMC's he basically said the FMC was the best there is, so my NHS consultant clearly rated them.

holldoll Mon 31-Dec-12 15:21:00

Thanks Arti, that's very reassuring. Congratulations on your results too. That must be a weight off your mind!
I think I will cancel the nhs scan. Best wishes for the rest of the pregnancy

BadMissM Mon 31-Dec-12 22:49:45

artigene Yep, was there today as well.. everything went well, had the initial scan and they took the bloods for the Harmony Test. Long day, but worth it, they were really nice, and really professional....

Baby developing according to plan, everything in the right place and at the right time....now just have to see what happens with the bloods....

Nicponty Tue 01-Jan-13 18:09:11

Hi,
I'm going for the harmony test tomorrow and thought I'd post because I'm having my test in Cardiff. The Spire Cardiff Hospital have only just started offering this test and is the first place outside London to do so. Just posting this so that anyone who lives nearer Cardiff and wants this test is aware of this.

BadMissM Wed 02-Jan-13 00:15:07

Nicponty Wish I'd known that, was a bit closer!

pyjamas2 Wed 02-Jan-13 21:26:31

Went in today for nuchal and results of harmony, less than 1 in 10000 but did not have a good experience. I asked the gender as I really wanted a girl and the first dr said it looks like a girl, then after waiting nearly an hour on the couch for the prof he came in for less than 2 mins and said oh you'd like a girl? I said yes, and he said well you'll have to cut off the penis then! I was really upset and shocked by this and wasn't sure if it was a joke but apparently not. He then left. I still can't believe what happened and wish I had never been told like that.

BadMissM Thu 03-Jan-13 13:21:10

Sorry to hear that, Pyjamas. I'm back for that next Monday myself. I kind of want to know the sex, but above all, want to know that the baby's actually alright more than anything...

Dexidoo Fri 04-Jan-13 07:32:52

Message withdrawn at poster's request.

Dexidoo Fri 04-Jan-13 11:29:43

Message withdrawn at poster's request.

BadMissM Fri 04-Jan-13 17:18:55

Waaaaaaah! £750! I've paid the £180 like you have dexidoo !!! shock

How did your results go BadMissM? Hope ok?!
I have to admit I ended up paying £580 for my Harmony test at FMC. Haven't told DH as he would go mad! Was a bit annoyed about that as I wouldn't have gone for it if I'd have known it would be that much, or I would have at least waited until I's got my combined test results first to see if my risk was high. Basically they said that the baby needed to be between very specific measurements (approx 10-11 weeks) in order to qualify for the £180 'deal' (not sure why). And despite my earlier 7 week scan and date of conception meaning I thought I was definitely in that range, they said I was measuring 11+2 when I went in so didn't qualify. hmm They didn't ask me if I wanted to go for the test despite this and didn't give me an option to back out so it was all a bit awkward really. It was great to see the baby on the scan (and the loos were very posh!) but I can't help but feel a bit cheated. Keep thinking what else I could have done with the money. Thought I would post this in case anyone else finds themselves in the same position.

BadMissM Sat 05-Jan-13 12:53:20

Yikes I had to check and check and check again..they did warn me in advance that I had to be within the parameters.... Haven't had the results yet. I have to go back on the 14th for the results.

BryanBeattie Sat 05-Jan-13 21:34:13

Harmony and MaterniT21 are both non invasive maternal blood tests for Down Syndrome, Edward Syndrome and Patau Syndrome. Detection rate is 99pc for Down Syndrome. Now available in the UK in centres in London and Cardiff and soon lots more. Costs vary so check if the fee includes an early viability scan and any confirmatory CVS or Amnio if results are positive. Currently samples are sent to USA for analysis.

BadMissM Sun 06-Jan-13 16:24:21

Cheapest that seems to be coming in atm is the FMC in London. £180.00 for viability scan, Harmony Test, and detailed nuchal scan IF you can get there within certain dates. 10 weeks to 11 for viability and nuchal, then 13 or so for nuchal scan.... They will do it outside that but they charge more for it.

BadMissM Sun 06-Jan-13 16:27:44

Yikes Now very very glad I went. Turns out my PCT won't do the combined test at all. It 'might' come in next year, but then as the midwife cheerily said 'will be too late for you'. If I hadn't acted when I had, I wouldn't have had any test at all. They do a blood test at about 20 weeks, and that's all....

So if I hadn't gone for the Harmony, wouldn't have any idea....

Grapesmum Tue 08-Jan-13 09:50:19

Thank you so much to all who have posted, this thread has been so helpful. I'm 31 years old and got a 1:373 risk figure on combined screening. My nuchal was 2.1 and Papp-a was 0.77. I think it's mainly my HCG skewing things at 2.72 MoM. I've been worrying quite a lot but don't want to take the risk with an amnio yet so I've decided to go for the harmony test next Monday. I will be 16 weeks so will also have an early anomaly scan. I'm sooooo nervous but really hope it will give me some reassurance. It sounds like most of you had a good experience at the Fetal Medicine Centre do I'm hopeful it will go well and I will feel confident in the results xx

Just wanted to update that FMC have been so kind to me this week! They refunded the £400 for the Harmony test saying it was an error. And when I got my dreadful news from my combined test result (1:2 risk) they talked to me for ages about it all. They are advising me to have cvs even before the harmony tests come through as my combined score is so high. They said no doctor would feel comfortable relying on the harmony result alone with such a high combined score, even though they are obviously very confident of the harmony test. I liked their honesty.

holldoll Tue 08-Jan-13 16:58:24

Good luck yikes, keeping fingers crossed. Did they ring you with the result?

BadMissM Tue 08-Jan-13 20:17:47

This thread has been a life-saver for me too. I would never have known about all of this otherwise, and as my PCT do nothing.... I haven't had a combined screening and won't get one at all

Grapesmum Good luck next Monday...they are really lovely... What time are you there? I'm going in on Monday for my Nuchal and results....

Yikes Sounds like they have been lovely. My heart goes out to you, I am terrified about Monday with my age.... it sounds like they gave you very sound advice though and took time to discuss....hope everything goes OK xxxxx

iclaudius Tue 08-Jan-13 23:14:10

badmissm i cannot believe you cannot get the nuchal locally - my friend had nuchal with her son who is 14...i have had it in the north of england with three of my children (privately) but my understanding is that admark or nuchal scan at least is pretty commonplace now....Even standard advice is for women over a certain age to have it ?

iclaudius Tue 08-Jan-13 23:19:14

yikes that is so interesting ....they do sound like they've been great in the end - good luck for the cvs

BadMissM Wed 09-Jan-13 02:18:58

iclaudius I got the advice on the nuchal from the NHS' own website.... yet when I asked midwives, and even my own GP they looked at me as if I were mad... and I'm 45, so pretty high risk even without other complications I've had... so far, my PCT (well known for being rubbish and also in the North of England) refuse to countenance the idea, even exceptionally....

Supershiv1 Wed 09-Jan-13 13:33:42

Hi. I went for my 12 wk scan yesterday and they were unable to do the nuchal because of baby's position. Was told I was 12+0 on the nose yesterday.
The NHS trust doesn't offer another scan.
Am a bit older (37) and don't really want to wait a few weeks for the blood test only one.
I have been reading this thread and am interested in Harmony, but i've googled harmony and FMC and can't see anything apart from press releases.
Anyone got a link or contact number?
Thanks

holldoll Wed 09-Jan-13 15:26:36

Supershiv - if you google fetal medicine centre it should come up.

Can anyone answer a stupid question - has anyone who has had the bloods done been contacted prior to their nuchal scna with the results? or do the blood results just come through with the scan?

Thanks

Supershiv1 Wed 09-Jan-13 16:13:15

holldoll - i did that but the website doesn't say anything about harmony? confused

BadMissM Wed 09-Jan-13 16:22:48

Supershiv- check your messages!

Holldoll well, they haven't contacted me with anything, so I guess they will give me them on Monday when I have the Nuchal. They combine the two for best results, I think....

Grapesmum Wed 09-Jan-13 21:24:14

Badmissm, that is terrible you can't get the nuchal
on the NHS, especially in view of your age. My trust didn't offer it in 2009 when I was pregnant with my son but they do now fortunately. I had it done privately with my son and was much more impressed than I was with the NHS anyway. My appointment is at 3pm on Monday. They didn't take many details over the phone so I hope it is all ok. Good luck with your results. Looking on some American forums it looks like there have been a few false positives which is a bit worrying.

I'm hoping they will just give me my results over the phone as being 16 weeks already I am just having an anomaly scan on the day and the blood tests. I don't see any reason I would need to return for the results?

BadMissM Thu 10-Jan-13 14:12:41

grapesmum Might see you there then...mine is at 3.30. They give you a form to fill out when you get there...

My NHS trust were adamant they wouldn't, despite my age....

Grapesmum Thu 10-Jan-13 19:09:34

BadMissM, good luck for monday, fingers crossed your results are good.

BadMissM Thu 10-Jan-13 20:54:38

Grapesmum Thanks so much...will keep you all posted!

sheisold Sat 12-Jan-13 23:18:17

Anyone know anything about 'intermediate risk' neither yay nor nay- a kind mumsnetter has steered me over here today after my nuchal which has me bewildered ...

TigerLily666 Sun 13-Jan-13 18:05:07

I went for the Harmony test at the The Birth Company in London (same building as the FMC) and am now waiting for the results. It was a really positive experience for me as I got a scan as well as the blood test - they provide this iBabyScan service which provides you with electronic video footage of your ultrasound (it's explained better on their website). I had a really stressful 12 week ultrasound on the NHS just before Xmas - so it really helped to have time with Dr Gibb who spent ages explaining things to me.

I hadn't been aware that Harmony was available in this country until reading this Mumsnet post. As I am not keen on having an amnio because of the miscarriage risk (history of recurrent miscarriages) it seemed like a good option. I had the combined test first before going for Harmony. My risk factor came back as low for my age (1:246) but because one of my previous miscarriages was because of Edwards, I'm really worried about trisomies in general.

Although it was expensive to travel to London and have the test, I'm absolutely sure this was the right thing to do in my circumstances. Everyone at the Birth Company was really professional, helpful and answered my questions honestly.

Grapesmum Sun 13-Jan-13 19:52:51

Thanks for your post TigerLily666, so glad you had a positive experience. I'm going to the Fetal Medicine Centre for my scan and blood test tomorrow. I'm really nervous but do feel you often get a better service when you pay for it! Will be great to have confidence in what they are telling you which I often found in the past on the NHS it is a bit hit and miss. I am a scientist (and a paranoid mother) and often have a lot of questions that my local hospital just can't or won't answer. Thank you for helping to put my mind at ease

BadMissM Sun 13-Jan-13 20:11:28

TigerLily666 sounds like you had a really good experience and that it was worth it to put your mind at rest.... I'm not keen on having an amnio because I had a stillborn child after a botched amnio 15 years ago...and then it turned out the blood test had been wrong and I didn't need the amnio....

I know it's expensive to go to London (I'm almost in Scotland), but I also thought it was worth it for ther peace of mind....

Grapesmum might see you there tomorrow!

lily06 Mon 14-Jan-13 12:43:54

BadMissM and Grapesmum good luck today, hope everything goes really well for you both.

What a week! Went in for my CVS last Weds only to be talked out of it by 'the Prof' who said he thought my chances were good for a positive outcome. He said to wait for the harmony test results instead and if they were ok then I shouldn't have CVS but should just come back in for my 20 week scan. He said the doc I'd seen on Monday (who told me my chances were bleak) was just a "silly woman; you should never listen to women". So I went home with hopes well and truly raised.
Got my harmony results today. High risk of Trisomy 21 (Downs). sad Have to go in for CVS this Weds but have been advised (by another silly woman hmm) that my chances of having had a false positive are slim.
A very sad day. And typically HRH chooses today to announce that she's due (probably) the same week that I was. envy
Not sure what I make of FMC after all this. I certainly haven't been given consistent messages from any of the docs there and they've dragged everything out for a week longer than they could have. (I had signed the consent form to have the CVS last week so I don't know why they talked me out of it). And although the Prof could be said to have a certain charm, I'm not sure how he gets away with some of the comments he makes. confused

ArtigeneAuberchoke Mon 14-Jan-13 22:17:40

I'm so sorry to hear you got a bad Harmony result Yikes. I wish you lots of strength for the next steps. I'm shocked by the Prof's comments. Was the "silly woman" one of his own staff?

artigene - thanks. Yes, the prof was referring to one of his staff members. He did a long speech about her (all jokey, but all to essentially undermine what she had told me). There were 4 other docs observing in the room plus the prof plus me & DH. I think he likes to put on a show.

peacefuleasyfeeling Tue 15-Jan-13 08:42:47

Yikes, before I begin I just want to say how sorry I am for your worrying result.

I just thought I would add my experience of the Harmony Test to the list. I also posted this, with an explanation of what the test is, in the Due in August thread in order to signpost anyone who has not yet heard of the test (why would one?) but who may be in the unfortunate boat of fretting about their combined test results to this thread.

I had mine done at The Harley Street Centre for Women, with the thorough and knowledgable Dr Pandya, when I was 15+4. I had spent Christmas eve trying to panic book an appointment at the FMC, having had my results for the NHS combined test a couple of days earlier, but their phonelines were down, so I rang the Harley Street Centre for Women instead, and I'm so pleased I did. I cannot praise them enough; very professional and efficient, yet warm and accommodating; I arrived in London ahead of schedule, and they were able to see me early; the admin team doted on my travel-weary 2 yo DD (we'd been on the road all day) and plied her with chocolates, the nurse let her "help" take my bloods, Dr Pandya was well versed in all things Peppa, and expertly multi-tasked; taking his time to answer all my questions with patience and kindness and performing a reassuringly detailed scan while keeping up a polite chat with DD. In fact, the scan alone made me feel much better, it was so unhurried and precise. I really felt I could not have been in better hands (but then I had done extensive research into his credentials and published work before attending).

I had my results yesterday, I feel confident that they are reliable, and feel so glad I went ahead.

partridgeinpeartree Tue 15-Jan-13 13:43:30

Peaceful - does it cost the same at the Harley st centre as the fetal medicine centre? I can't find anything on their website.

BadMissM Tue 15-Jan-13 14:38:11

Well, went for my results yesterday and they were very good, less than 1 in 10,000 chance apparently... I am ultimately relieved that I went to the FMC. The doctor I had was lovely, very professional, and very reassuring. She was also extremely thorough with the Nuchal, even getting me to go and relax again to get the baby in the right place. Am so glad I went....

Yikes I'm sorry to hear it wasn't too good.... are you going for the CVS?

Nicponty Tue 15-Jan-13 17:27:23

Had my results for the harmony test today and they were very good. Such a relief. I'm 40 so considered high risk. Despite the cost I'm glad that I had the opportunity to have the test as it has given me peace of mind. Also lucky that the test is offered in Cardiff so didn't have to travel. The two week wait for the results was hard though.
Test through spire clinic in Cardiff with Bryan Beattie.

BadMissM Wed 16-Jan-13 15:08:40

I know, it's a relief to know it's all OK, and I would recommend it to anyone!

ela01 Wed 16-Jan-13 15:10:26

I just wanted to say that The Avenue Clinic in Sevenoaks, Kent is also now offering the Harmony Prenatal Test so it is definitely becoming more widely available. Mr Anthony Abbas is the Fetal Medicine Consultant there and has been around for many years providing CVS and Amnios. I found this thread so informative and first hand. I like to hear of so many good outcomes and wish everyone lots of luck. I had difficulty with conceiving both my two children but they are now thankfully teenagers!

TigerLily666 Wed 16-Jan-13 20:50:39

Hi
Thought I would give you an update since my post on Sun. Unfortunately I got a call today from the Birth Company that there wasn't enough fetal DNA in my blood sample to get a result from the Harmony test. So they will redo the test free of charge but I have to travel to London again. So back again on Friday. I knew there was a small risk of this but I'm feeling a bit down about it all tonight. I feel that I'm no further forward and time is running out as I'm now 15 weeks pregnant. Wish me luck.

holldoll Fri 18-Jan-13 10:51:43

Just wanted to post quickly - I had my nuchal yesterday at FMC, harmony results were fine. I had a really positive experience, an amazingly patient doctor as the baby wouldn't get into the right position. So after 3 hours, several walks and food we finally got all the measurements needed.
I would thoroughly recommend them and I'm now considering going back for my 20 week scan.
Good luck to everyone waiting for results

HelloLA Wed 23-Jan-13 21:02:32

Hello everyone,

I had the Materniti21 test a few weeks before Christmas, after being given a 1:150 risk for Downs based on nuchal scan measurement.

I'm 32. My nuchal was 2.9, and my hospital classed that as 'high end of normal'. I can't remember being given my PAPP-A and HcG results, and I doubt they were included in calculating the 1:150 risk, since they'd only just drawn the blood when they told me. The doctor recommended Materniti21, and I had the blood sample drawn there and then, since I knew I'd only worry about it. I hadn't actually given much thought to genetic testing before this screening, so was taken off-guard by (what I perceived to be) a borderline result. Did a lot of Googling when I got home, tried to understand it all, and especially appreciated this section of Mumsnet.

As others have said, it took two weeks to get the result (even though I'm in LA and the sample only had to go down the road to San Diego!). Thankfully, it was good news, and they also told me the gender.

Here in the US, my hospital's 'sticker price' for the test is about $1300 (I don't know what we'll actually end up paying after all the insurance wrangles), so the private clinic cost in the UK really isn't bad. Even if it's not available on the NHS, I think it's important people at least hear about it, as it's so, so much less invasive than an amnio. All the staff at my prenatal diagnosis center were totally clued up on it, but at my regular ob-gyn clinic some of the nurses weren't really familiar, and I had to convince one that I actually got gender results that early!

Anyway, I've just had my second trimester scan (equivalent to 20-week scan in the UK) and, touch wood, everything looks okay. Aside from the Materniti21, my Integrated Screening results (NT scan plus NT bloods plus further blood test at 16-18 weeks) eventually came back with a 1:5000 Downs risk. If anything changes I'll update, but so far I'm happy with having taken the Materniti21.

Booka Mon 28-Jan-13 10:15:04

I'm so glad I found this thread. Not sure if there are still ladies waiting for results or not but I've found the comments very helpful. I'm booked to go to the FMC on Thursday for a scan and bloods. I'll be 14+2. Worried about waiting for the results as I'm a really worrier and finding it hard to think of anything else at the moment. Good luck to anyone waiting for results.

BadMissM Mon 28-Jan-13 13:00:53

Booka... had my results a couple of weeks ago, but it was thanks to this thread that I found out about the Harmony test at all, and I'm so glad I did. They are so nice, talk to them, ask them questions, and I'm sure they will calm you down. They did clam me down, and I'm a terrible worrier! Good luck!

Booka Mon 28-Jan-13 13:22:21

Thankyou BadMissM. I hope your results gave you peace of mind. I only found out about the test after talking to the charity ARC. The lovely lady was very helpful and told me about the test and that they recommended the FMC.

BadMissM Tue 29-Jan-13 11:16:10

Booka Yes, they did, less than 1 in 10,000, which as I'm 45, made me feel a lot calmer about everything.... The FMC were very professional and very good. It was from this thread that I found out about them, and went, and even though is a 600 mile round trip, it was worth it.

Booka Tue 29-Jan-13 14:13:23

BadMissM I'm so pleased your results are negative. It's nice to know a clinic are professional and friendly before you go. 600 is a long trip but as you say worth it for peace of mind. I wish you lots of luck with your pregnancy, I hope you can relax and enjoy it now. My first pregnancy was a result of IVF after 6 years we got lucky on our third go. I was so up tight I really didn't relax until about 35 weeks so felt I missed out. This pregnancy was a magic natural, so just as precious but a real shock. I was hoping to enjoy it this time as it will be my last chance but I guess things never go as planned. Thankyou for your replies and again good luck with your pregnancy :0)

BadMissM Tue 29-Jan-13 14:17:07

Hey Booka This one's definitely a 'last chance' at 45! When I had DD 14 years ago, had just had a child stillborn at 7 months after a botched amnio, so was terrified to enjoy the pregnancy. In a way the Harmony Test has left me more free to enjoy this one....especially as after having it found my Trust still doesn't offer comined/nuchal whatever your age...

I've had 2 friends finally get pregnant whilst waiting for IVF!

Grapesmum Tue 29-Jan-13 14:31:29

Hi all

Just thought I'd give a quick update. I found this thread so helpful as there is such limited information around on the Harmony test. I went to the Fetal medicine centre on 14th Jan at 16 weeks after my NHS combined screening have me 1:373 risk at age 31. They did a detailed anomaly scan and saw no soft markers for down syndrome and my baby BOY looked perfect (also got to find out gender!). The sonographer was very thorough and seemed very experienced. After the scan she said it was very unlikely in her opinion that the baby would have a trisomy but recommended harmony for peace of mind as scans don't pick up all cases of down syndrome. We also got a DVD which is lovely to look at. Went straight in after for my blood test. I had heard they are often running very late but I got in early for my scan and I was finished everything in about an hour. I got my Harmony results yesterday after the full two weeks and thankfully I'm low risk for all three trisomies. The feeling of relief was indescribable. I'd fully recommend the FMC to anyone, although I paid £600, VERY pricey but worth it to me as my anxiety was so bad. Hope this helps others in a similar position

OrdinaryGirl Sat 02-Feb-13 11:42:21

Thanks so much ladies for adding your experiences to this thread - it has been a rare and precious source of information for me. I can't believe how little discussion there is about it on tinternet.

I lurked here in December and on the basis of what I read, booked the Harmony test at the Fetal Medicine Centre for next Friday when I will be 10 weeks 4 days. They offered it free when I booked the nuchal translucency test for £180. I owe you guys bigtime because I wouldn't have even known about it as it's not advertised on their site.
Incidentally Spire in Cardiff offer the Harmony test alone for £750!!

Even though we're in Bristol, factoring in £90 train tickets and then again £90 a fortnight later, the FMC is still massively better value.
I think the FMC are only offering the Harmony test free between 10-11 weeks as they're trying to build the dataset on which they can base the reliability - perhaps with a view to eventually getting it rolled out on NHS.

From the other stuff I've read about it, it's still a 'screening' test but with lots more data it might become the closest thing you can get to a diagnostic in terms of reliability without an invasive test, which is obviously like the holy grail for antenatal testing.

Based on the rather limited information I've found, it seems as though false negatives are not possible, but there is a tiny chance of false positive, which obviously can be checked for definite with amnio / CVS.
Has anyone heard of a false negative with Harmony?

I only have 5 more days to wait for the blood draw and viability scan (don't even know if the little anklebiter has a heartbeat yet) and assuming all okay (and not twins - test doesn't work with twins. Sweet Moses what if it's TWINS??) it will be a long old 2 weeks until the results of the blood test come back from the States and they do the NT scan.

I will keep you posted as to my experiences and the results.

Meantime, I'm wondering whether to cancel NHS NT combined test. If the FMC really is the gold standard, I don't want to worry myself (like Artigene's experience) with a potentially negative scary reading from NHS' inferior equipment and possibly less experienced sonographers. But then more data is better, right? And what if FMC don't get a decent sample or on the day, the baby's lying the wrong way for the NT?

On the other hand I'd prefer to limit the ultrasound exposure to the baby to what's absolutely necessary. Am broadly content with safety of ultrasound but have been slightly disquieted by some research I've read...that has not put me off the recommended tests but has definitely decided me that I won't be getting a 4D 'fun' scan. hmm
Would really welcome your thoughts. smile

BadMissM Sat 02-Feb-13 15:14:38

OrdinaryGirl FMC were excellent, I was really convinced that it was all worth the money. Like you say, they are also offering it at that point at that price for research, which I'm proud to be part of if it means this can be brought to everyone. The money from the FMC is going to the FMF to try and make it available to everyone....

I was told there was a miniscule chance of a false positive, but not of false negative.

I know it's a tense time while waiting, but the results are well worth it!

I have finally been given an NHS blood screening last week, but was told my results would probably be high by the way they calculate it (seems insane...). But I'm 45, and maternal weight is also counted against you.... My PCT doesn't offer Nuchal Screening either.

Ultrasounds.... DD had about 25, was a really difficult and complicated pregnancy, and in France they will scan as much as neccessary...and she's a grumpy stroppy teenager fine!

OrdinaryGirl Sat 02-Feb-13 18:50:28

BadMissM you are lovely to provide such a lightning response smile thanks Delighted that you got a negative and that the Harmony scan & FMC were a good experience. I loled about your teenage daughter grin and that is reassuring about all the ultrasounds.

I think I will go ahead and have the NHS combined & NT test as well, (it's MAD that your trust didn't offer it) and will steel myself to be rational and pragmatic and trusting if the results differ wildly from the FMC's.

Good to know about the false -ve / +ve points. That does chime in with what I've gathered so far.

I do get a bit frustrated that as a pregnant woman who is actually the main person affected by what happens, you have to be Sherlock bloody Holmes to piece all this stuff together by yourself. I sort of feel the companies providing the blood tests should update their websites on a rolling basis with the number of women who have had the test, and the associated accuracy rates as they become available, so that we can be properly informed.

The data available to pregnant women on the Ariosa site seems so condescending and general (I'm assuming the largely non-pregnant clinicians get the full story) and in this day and age, where most in developed countries have Internet access, and lots of women have degrees / topnotch health awareness / minds like sabres, it just isn't really good enough.

Anyways... #1 stepdaughter has adorably made us chilli for dinner so I need to haul my sorry behind off the sofa and eat it.

Á bientôt. Xx

BadMissM Sun 03-Feb-13 19:45:05

OrdinaryGirl It's pretty lucky that we have minds like sabres...we need them to be Sherlock bloody Holmes to find out what's happening!

I'm steeling myself to be rational about the NHS blood test...I know it will be a high-risk result, through my age and nothing else...

It's amazing that we have got as far as we have with the paltry amounts of information available. None of the midwives I've seen have heard of the Harmony Test, and only the Senior Consultant had!

A bientot et bonne chance xxx

mommymia Tue 05-Feb-13 15:10:03

I had a non-invasive prenatal test for my latest pregnancy at my usual clinic - the London Ultrasound Centre.
They gave me the Harmony prenatal test and I got the results in less than 2 weeks. The waiting is a killa but am soooo happy I could have this test on my third baby as I'm not getting any younger and the thought of having a CVS or amnio terrifies me.
Test results were all good so I'm a very happy bunny! smile

alm83 Tue 05-Feb-13 21:28:55

Dear all,

I just would like to thank all of you for posting about the Harmony test and the FMC. I had a second NT scan yesterday at the Fetal Medicine Centre after my NHS results came back to 1:154. Although the results were still within the 'low risk' category, I panicked by the fact it was so close to the threshold! (I am 29) Well, I had a fantastic experience at the FMC, I phoned in the morning and they gave me an appointment for the same day in the afternoon, they measured loads more and the baby looks healthy. My results were re-assessed and they came back at 1:657. That was already a huge relief. However, because my blood levels were a bit off the 'normal' I will take the Harmony test on Friday, just for piece of mind... I am 13 weeks and 2 days... I really hope it will all be fine! Good luck to all of you as well! smile

Positive38 Wed 06-Feb-13 15:32:02

Hi Ladies, really glad I found this site and this post as i had a harmony test yesterday at the FMC.
I am 38 and our scan was perfect at 12 weeks although a local hospital we were scanned by sonographers from kings college so was very indepth.
we told everyone our good news only to get the call Monday that we are high risk.!!
has been awful few days:
basically i have high HCG of 3 and PAPPA of 0.65 add to that our IVF pregnancy and my age and got risk of 1:34
after discussing that we didnt want intrusive CVS as i couldnt face miscarrying we went into london luckily we are only an hour away, got an appointment same day and was treated so well.
I am 13 weeks today so had nuchal checked and bloods this came back same as NHS but scan was perfect not one downs marker at all!!
she thinks its likely we will get a negative for Downs but am petrified and feel so down and worried.
worst thing is is take 14 days anyone had it back sooner????
thanks for reading xx

Positive38 Wed 06-Feb-13 15:33:15

do most ladies who come back high Risk end up ok?? seems so many false Positives on NHS screening

BadMissM Wed 06-Feb-13 18:50:24

positive 38 and Alm83 I am really glad that I went for the test. My trust didn't even want to give me a test, then did grudgingly last week. I got the results from the NHS test today. Just a blood test, no Nuchal.... 1 in 15.

My Harmony Test, much better, much more detailed, with Nuchal.... less than 1 in 10,000 for all 3 trisomies. Luckily I had this 2 weeks ago, so I'm not panicking. If you read the thread, most high-risk ladies have been fine one here xxxx

Positive 38 They calmed me down completely at the FMC. The 2 weeks waiting is hard, but mine was even worse than yours on NHS, and I'm 45, and everything was fine.... Don't worry and if you want a moan on here, we're here to listen xxx

alm83 Wed 06-Feb-13 22:46:57

BadMissM and Positive38 Thank you for your reply... I never thought being pregnant could be so stressful! I have my Harmony test booked for Friday morning... I guess I will get my result in two weeks? So on Friday 22nd Feb... I will be 15 weeks and 4 days then... I really hope it will all be OK. It is such a strange feeling, we want to tell everybody, but at the back of my mind there are the NHS results... anyway, good luck!

Positive38 let us know how it went! Did they say to you that it will take two whole weeks?

Positive38 Thu 07-Feb-13 11:17:26

Hi Ladies
Sorry Just seen this post didnt get an email confirmation of your postings, is there anyway i can set this up?

HI Badmissm - so you were pretty High intially then 1:15 can I ask what made you so high??

my bloods and NT are as follows:

HIgh HCG - 3.43 ( they like to see 1)
SLightly Low PAPP - 0.61 ( they like to see 1)
Add to that my age - 38 they also factor in IVF and there it was
my NT was 1.9 so this wasnt a factor in this at al.

did you also have to wait a FULL 2 WEEKS ?? she said some come back in 10 days.

Also when they call how do they communicate the results?

past few days ive been a nightmare so miserable and down. i gave up work to do IVF so nothing to consume my mind either.
Feeling a lot more positive today..... so many women have a good outcome.

HI Alma83 - I never knew being pregnant would be so stressful my IVF was so easy,id do it all again tomorrow but since we got our BFP its just been one worry after another

They said it takes 14 days but some come back earlier i am praying its back by next Friday that way we only have 1 weekend to get through.. and i have a busy week next week.

sadly we told EVERYONE last Thur as our scan went so well and she said she didnt think we would have a problem i guess my high HCG and age threw all that out window, avoiding my friends right now.

Really glad I found this thread as the whole harmony test hasnt been talked about much.....

Positive38 Thu 07-Feb-13 11:18:06

xxxxxxx

BadMissM Thu 07-Feb-13 11:37:49

Positive38 I haven't had the full NHS result, just a phone call. She said 1 in 15. I was told however here they factor in age, previous pregnancies (mine haven't been great), and BMI against you (I'm 45 will be 46 by birth, with a BMI of 30)... Think they also factor in partner details, and my DH is 48 and has a sister with special needs. This was yesterday, so will find out details next week in clinic...

Also, my PCT just do a blood test, the NT wasn't a factor at all....

I waited a full 2 weeks, but it was taken on New Year's Eve, so those delays would have made a difference...other people have said 10 days... They told me when I went back for the NT scan, as I had mine early (10 weeks then 12 weeks).

About 16 years ago had an amnio after a blood test put me at a 1:30 risk aged 29. The amnio was botched, I lost the baby, and it turned out it was a false positive, my risk was non-existent. I don't believe the standard blood test very much, which is why I went for Harmony (a 600 mile round trip twice for me...)

I am so glad that I went, or now I would be panicking. TBH, I am just taking my high NHS result as proof of how shoddy my PCT are, and not paying much attention....

BadMissM Thu 07-Feb-13 11:38:52

As for email confirmations...not that technical! I just look on Threads I'm On! xxx

Positive38 Thu 07-Feb-13 12:16:18

Oh I see you wont find out till clinic but as you said u have had harmony now so you have peace of mind..... wow where do u live then hun.
Thankfully we are 1.5 hours from London to Harley Street ... when we went for consultation on Tuesday as we turned down CVS i needed to do something that day so am thankful they fitted us in.

so do they say you tested negative for all 3 or do they say you have a risk factor of hence u are low or high risk?

am so sorry to hear about your amnio 16 years ago what an awful time for you and you.

well i dont believe the blood tests either... i believe IVF pregnancies who up higher HCG anyway they have taken this into account... and my age.

i am counting down the days...... that it be 10 days

thanks again x

OrdinaryGirl Thu 07-Feb-13 12:54:48

Hello brave and brilliant ladies.

Just reaching out for a paw of support really.

Have my appointment at the FMC tomorrow - viability scan and Harmony blood draw. Heart in mouth a bit - hands cold and clammy. Have lurking worry about a missed miscarriage - such an awful thing to contemplate that you have all the normal pregnancy symptoms but not know something's gone wrong.

Don't think I'll be able to even look at the screen or the sonographer until they say something. Assuming all okay, can't even think about how I'll be feeling this time in 2 weeks waiting for the Harmony result.

None of my clothes are comfy but I'm too scared to buy new ones until/unless I see a heartbeat and know I have a healthy baby.

Hope all of you in the same situation are bearing up okay. Sending love and light. Xx

BadMissM Thu 07-Feb-13 13:08:06

Positive 38 Where do I live? Not very far from Scottish Border! So as far as you can go in England, really!

On Harmony I was negative for all 3, less than 1 in 10,000 for Trisomies 13,18, and 21. They were perfectly happy with my HCG and PAPPA-A.

My HCG was 1.1233
PAPPA-A was 0.9773

(That was at 10 weeks at FMC)

No problem, it's a scary time!

OrdinaryGirl Chances are, everything's against that having happened if you are having the symptoms. My heart was in my mouth at the first scan...I was frighetened to look!

Once you've had the first scan and seen the baby, somehow makes it easier to wait for the Harmony result...you know at least everything's there and in the right place!

Love and light back to you, and a virtual hand-holding for tomorrow. (but you won't need it, they are absolutely lovely and very reassuring!) xxx

alm83 Fri 08-Feb-13 18:16:57

Dear all,

Just to add my experience today at the FMC. I was so well treated, they gave me lots of reassurance and the whole process was done in under an hour. If you had a NT they will only scan the baby for a heart beat and they take the blood samples. I asked if I could now whether the baby is a boy or a girl but they said that because the tests concentrates on trisomies, they don't look for the sex. I also asked if the results will be available after the full two weeks and the doctor explained that the reason they take two samples of blood is to test one first, and if that works, you can have your results in 10 days. If it does not work, they will check the other tube and then you will get your results in two weeks.

I guess the waiting will be difficult... I will try to get myself busy and not think about it too much. I am so glad to hear that so many of you are getting the expected results. Good luck Positive38 and OrdinaryGirl, I hope you get your results very soon! Please let us know!

Good luck to all of you ladies!

xxxx

OrdinaryGirl Fri 08-Feb-13 19:29:12

Checking back in as promised.... THANK YOU for all of the e-hand-holding and positive vibes, especially BadMissM and Alm83 smile

Had my initial appointment at the FMC today - good news so far!

Little ankle-biter is very much there (you do start to doubt EVERYTHING) and has a heartbeat of 170bpm which I gather is normal. Crown to rump length also normal and I was only one day off in what I thought my dates were.

2 weeks now before we get the Harmony test results back and have the nuchal test, but I do feel okay about it at the moment. High risk due to age (1 in 270 at my age of nearly 36) is still a low risk if you imagine it as a room full of 270 people with guns pointed at you, only one of which is loaded. Actually, don't imagine that, it's not in any way relaxing.

FMC was just a delightful experience. Beautiful, light, spacious premises with very professional, friendly ladies on reception, and we had such a kind, smiley doctor (Dr Barbara Bregant - sort of a Bond Girl of obstetricians I imagine - Russian-type accent, slim, stunning, exuding competence) who patiently waited for me to stop crying with relief (it turns out that heaving sobs make the probe bounce up and down) when I saw a real live BABY on the screen.

There was time to ask all the questions we had - interesting pieces of information were as follows:

- to Dr Bregant's knowledge and the knowledge of the lab technician I also asked, there have been no false negatives recorded for the Harmony test. She did caveat this by saying that obviously Ariosa the test providers couldn't track down all women who'd had the test to confirm the result, but as far as she knew, there was a tiny incidence of a false positive but not of a false negative. The FMC have only been offering the test since mid-October 2012 but I'm guessing they are keeping a tight eye on accuracy.

- in the event of a high risk result, they can apparently do a CVS on the same day (£500) which is good to know if you're travelling from outside London. I asked what the FMC's miscarriage rates were for CVS and she rather coyly said that she could only quote the official nationwide figure for the procedure - i.e. 1% - but that the FMC's rates were lower / better than that. Which is really reassuring. Hopefully it won't come to that.

- they weighed me and measured my height - apparently women with 'normal range' BMIs seem to generate more accurate results, though exact figures would be something you'd need to ask about I guess.

- if you have an NHS nuchal test / combined test before the 2nd FMC appointment, and the results are terrifying, you can call up the FMC and if the blood results are back from America they will tell you over the phone. She mentioned a case where the NHS results had frightened the bejesus out of one poor lady with a risk rating of 1 in 5, but the FMC & Harmony data said she was actually very low risk & Harmony test was negative. Good to know. Having been there and seen the way they do things, I would put my money on FMC every time.

So that's my debrief for now. Anything I've missed just ask. Otherwise I'll be back when I have more to report. Agent O over and out. x

BadMissM Fri 08-Feb-13 20:42:32

Hi OrdinaryGirl Sounds like it went really well. I had Dr Bregant as well, and she was lovely to me too! She was really thorough, and answered all of my questions and concerns! Lithuanian btw (I asked!) If I hadn't had the Harmony, I would have had the crap scared out of me by the NHS result too xxx

SomeDaySoon74 Fri 08-Feb-13 22:51:13

For what it's worth, I had a terrible experience with FMC and the Harmony test. Wouldn't recommend them to anyone. Spent the worst two weeks of my life waiting for results which they prolonged based on their superior knowledge (telling me I would be fine so no need to have CVS) and ended up having to be 'saved' by the NHS just in the nick of time to have CVS and then a a surgical termination just before the cut off. Paid lots of money for fancy doctors in glamorous outfits and fancy settings telling me nothing was wrong when in fact my baby had Downs and I should have been getting on with having a CVS to get confirmation of that. It's all well and good for those of you with good news to say how great FMC are but for those of us with bad news I think they offer an appalling service. When I eventually got confirmation of Downs via the NHS all FMC could say was "well we did expect that to be the case". The Prof had said "see you at 20 weeks" when I saw him, so not sure how that equates. Truly appalling.

RufousBartleby Fri 08-Feb-13 23:28:25

Oh someday - i recognise you from your name change i am so sorry your experience was so awful. completely agree this thread is full of good news stories which is lovely on the one hand but in another a pretty useless endorsement if the practice deals so poorly with bad outcomes. As you know i had the same outcome as you but was ttreated so much by the private practice i used. i wouldnt go near the FMC based on what youve said here and on your previos thread - i was truly shocked by the way you were given false hope and poor advice.

RufousBartleby Fri 08-Feb-13 23:30:34

Sorry on my phone - that should have said treated so much better.

OrdinaryGirl Sat 09-Feb-13 08:54:13

SomedaySoon74 I am so sorry for what must have been an absolutely awful experience. sad (((hug))) It can't be easy reading good feedback on FMC when it is so at odds with what happened to you. This is the first instance I've heard of the Harmony test giving a false negative so that is something important to bear in mind - thank you for being prepared to share the information.

RufousBartleby really sorry to hear of your loss too.
Whatever stage you're both now at and whatever your plans for the future, you have my heartfelt good wishes for complete healing and a joyous outcome. I'm pretty sure the legions of mumsnetters reading your posts will be sending you all the luck and good vibes in the world. Xx

OrdinaryGirl Sat 09-Feb-13 09:01:44

SomedaySoon74 just to clarify I meant the false negative is something for me to bear in mind - I read my last post back and that bit didn't sound like I meant it to. x

alm83 Sat 09-Feb-13 10:56:29

SomedaySoon74 i am so sorry you had such a terrible experience. My thoughts are with you and I wish you all the best of luck in future tries. Would you mind if I ask you, did you get a false negative result from the harmony test? Sorry I did not understand that bit.... I think all of us are trying to get the positives from everybody's experiences, but it is true we have to listen to all of them to make an informed decision. Thank you so much for sharing your experience with us!

My thoughts and prayers are with you....

SomeDaySoon74 Sat 09-Feb-13 20:43:08

Hi again. Sorry for the rant yesterday, was feeling a bit emotional. It's been less than 3 weeks since my TFMR so I'm still a bit up and down. Thank you for everyone who's been sympathetic though, I appreciate it.
Just to clarify the bit about false negatives for those of you considering the Harmony test, no I didn't get a false negative. I got a 1:2 result from my combined test at FMC so the doc I saw there recommended I had CVS before waiting for my Harmony results (saying it was pretty much clear-cut from the scan & bloods). But the Prof looked at my results a few days later and said I shouldn't worry about the 1:2, it all looked ok to him. He said I shouldn't listen to the 'silly woman' who had given me the 1:2 result (one of his own team) and joked she was suicidal as her boyfriend had finished with her so she was being overly negative about my chances. I had signed the consent form for the CVS but he talked me out of it saying I should wait for the Harmony result rather than having the CVS. (The previous FMC doc had said that even if the Harmony gave a low risk result she would recommend a CVS.) Prof disagreed, putting 100% faith in Harmony. He said I would get the Harmony result within 2 days and it would all be fine. I didn't get the results in those timescales. So spent another 5 days in emotional turmoil before getting my Harmony result. The Harmony came back as high risk and I had to wait another 2 more days to have CVS (on NHS) and then 2 more days for the result to confirm the result (positive for Trisomy 21, Downs). NHS won't do a termination based on Harmony results, they need 100% proof that the baby has chromosome abnormalities. I had the TFMR on the very last day that the NHS would do it surgically - 13w4d and that was only because of the fantastic NHS docs I spoke to taking pity on me. (I had made it clear to the prof that i would want a surgical procedure if the worst happened, and explained that time was short, but he was so convinced i would be ok that he said not to have the CVS. I'm so angry with him for this as I would have had the CVS done a week sooner if he hadn't talked me out of it.). Late surgical terminations increase the risk of a damaged uterus/bowel during the procedure. So the Prof should have taken this into account when talking me out of the CVS.
I'm going to try again for a baby and if I do get pg again I would almost certainly want to have the Harmony test again as my chances of a Downs baby are now 3x higher automatically, but I would definitely look for another practice to conduct it. Everyone medically that I have spoken to about the Prof has spoken of his reputation but not always in a good way. Apparently he is like a celebrity in medical circles but has an appalling/offensive bedside manner and isn't necessarily as good as he thinks he is.

SomeDaySoon74 Sat 09-Feb-13 21:13:18

P.S. Should have said: Rufous - thank you so much for all your support a few weeks back. It really helped! Hope you're doing ok. xx

BadMissM Sun 10-Feb-13 19:02:58

SomeDaySoon74 As someone who also lost several children, through ectopic, miscarriage, and one through a false positive blood test and a botched amnio that wasn't neccessary, I have found the Harmony Test much better. I knew there was a high chance with my age that I would have a high result and have to have further testing, possibly. But my aim was to avoid that if I possibly could.

I had a miscarriage of twins two years ago, which my PCT refused to test for reasons, and blamed everything on my age, and one consultant, on 'the fact I wasn't married'. My PCT still won't do nuchal and combined testing.

But as a 45 year-old who was terrified to the point of fainting about another amnio as they not only botched mine, it hurt like nothing on earth, it meant I could go through this pregnancy without spending nine months of worry, for which I am eternally grateful.

I can't speak for the Professor, but the treatment I received was wonderful, and if I could afford it, I would have returned for the rest of the tests.

I know everyone has a different experience, but I was just sharing mine as it happened.

RufousBartleby Sun 10-Feb-13 20:03:45

thanks Someday you helped me too. Just knowing there was someone else going through the same thing (horrible as it is) made me feel less alone. So thank you for sharing. I hope you are doing okay smile

Positive38 Mon 11-Feb-13 12:21:17

Hi Ladies,

someday and Rufous I am so sorry for your loss my heart goes out to you both what an awful time for both of you.... really am so sorry...

This wait for Harmony results is killing me. be a week tomorrow. i have positive days but i also have really crap days where i just focus on us being the % that has downs. i am sleeping but having such vivid dreams i wake up exhausted. my head hurts and i feel drained. my partner is at work and doesnt think about it all day and feels positive so why dont i.

I keep thinking how positive our scans are , and that my HCG could be due to IVF pregnancy or just how i am in general.

cannott enjoy being pregnant, have avoided most of my friends as we told them we are pregnant and now this.....

I rang FMC to see if we would be a 10 or 14 day result and she cant tell us. if 10 days will be Thur or Fri this week, if not then MOn or Tue next week!!!

I know so many women come back ok so why cant i stay positive!!!

badmiss so glad you got your Harmony test before NHS results I will defo do that next time this wait is killing me. you must be over the moon

Alma you now have the long wait like me how are you feeling?

* Ordinary* and you are waiting too, so glad your bubs was there nice and strong, we had scans at 7 weeks 8 weeks 11 weeks and 12 weeks and every time i worried is there a heartbeat, now i just have another worry

So nice to have found this thread it really helps to know others are going through this.... thank you for your support xxxxx

alm83 Mon 11-Feb-13 17:48:19

Dear all,

i cannot tell you how good it makes me feel that you have shared all your experiences. I guess it just makes you feel that you are not alone! Positive38 I was actually thinking about you today, as I know you had the test done a few days earlier than me... I am trying not to think about it too much, and like you, I am trying to focus on the positive results of the scan and not the bloods. For me it will be a week on Friday, so I have to wait a bit... I really hope the results will come at 10 days so that I can relax completely. It is funny my husband is also so positive about it, he does not even think about it anymore! I think he has almost forgotten I did the test...

Being at work makes me forget and the fact that I generally feel very normal (the days of strange sickness feeling are gone now) makes it easier. I work in a school and next week is half term... I so want to enjoy my free week and maybe do my first bit of baby shopping! Anyway, I keep sending my positive vibes to all of you and please keep us posted!

Someday74 thank you so much for clarifying about the false negative, and I am sorry for what you have been through. I really hope you will feel better soon enough to try again!

Hugs to all of you ladies!
xxxx

Positive38 Mon 11-Feb-13 21:25:08

hi alma i have spent too much time googling.not good.
one thing i have read is that an ivf pregnancy which mine is can make bloods squiffy....praying this is case.
was gutted that fmc couldnt give me any indication.when ill get results.
fri is 10days for us so praying it be.then.
i swing from being positive to really struggling through.
i just.like u want to enjoy pregnancy.

will be thinking of u too and pls keep in touch.....

hope everyone else is ok xxxx

alm83 Thu 14-Feb-13 17:16:58

Hi all!

Tomorrow is going to be a week since I did the harmony test... it seems like no time has passed but at the same time I feel I went to London ages ago! Difficult wait I have to say... I don't think I will hear from them until Monday at least! Ufff how hard! How is everybody coping? Any news? Lots of love to you all!

Positive38 Thu 14-Feb-13 20:08:31

hi alma been thinking of u ...im not coping too well today.tmrw be 10 days since mine and i still aint heard....
been upset tonight......i want to know my baby is ok.
wish id never had screening test.now.worst wait ever.
pls let me know when u get call.
did they say how long it wld take? xx

BadMissM Thu 14-Feb-13 22:55:39

Alm83 and Positive38 But it will all be worth it when you know xxxx

Positive38 Fri 15-Feb-13 12:51:42

Results in and i cant tell u how happy we are
tested negative for all 3 Trisommeys.... so have gone from 1:34 to 1: 10,000
I have sobbed like a baby the past 10 days have been awful....
i can finally start enjoying our pregnany
ALma just waiting for your results now hun and i am behind u all the way xxx

alm83 Fri 15-Feb-13 15:22:01

Positive38
You cannot imagine how happy I am for you! Truly, I feel as if the results were for me! CONGRATULATIONS! Enjoy your pregnancy! It is a week for me today... I might get mine on Monday... really hope so!
Really really happy for you! :-)
xxxx

OrdinaryGirl Fri 15-Feb-13 18:19:30

sticks head round door apprehensively...breathes sigh of relief at only good news since last login

Positive38 Wooooohoooooooo! Awesome result and I am totally thrilled for you. You must feel like a wrung-out rag with all the emotions...and it will be wonderful being able to chill out a bit. Now clear off and celebrate this excellent news by looking for something gorgeous for your ankle-biter! Big high-five. grin xx

Alm83 How are you bearing up halfway through your wait? I have been reeeeaaasonably calm this week, probably on some level saving my energy for an enormous neurotic anxiety-generated hissy fit for around next Wed/Thurs I reckon... Husband is completely, spookily calm and confident of a good result. I think I have eaten all the worry pies.

I am at the FMC next Fri 22nd too (12:30 appt) - will be keeping everything crossed for a brilliant result for us both. Sounds like you're planning to call them to get the bloods result beforehand? I have my NHS combined screening on Wed and was sort of thinking I would wait to get the FMC blood results until Fri when I see them, but actually, on reflection would rather get news in own home where can jump up and down / bawl eyes out without feeling embarrassed. Scary that somebody somewhere knows a result that will change our lives but we don't. Trying to jam my diary full of social stuff so I'm not at home on the lappie, catastrogoogling and trying to research myself into having a healthy baby. Thank goodness have stepkids this weekend - they are all sweet and funny and will take my mind off Next Week.

And how you doing BadMissM? Trust all well. smile

In other news, and not to hijack post too much - waded through all the posts on the 'Are people drinking alcohol when pregnant?' thread (compulsive like live soap opera) which the Mumsnet email highlighted. Ended up falling asleep at midnight and being exhausted all the next day because had to get to the end of the thread. Was a bit transfixed by the very very strong feelings and ironclad spiked judgy pants it generated and imagining the personalities involved. Lots of warm good sense and support for different choices on there too, which made me feel all warm and fuzzy about the community. Love Mumsnet - really glad I joined.

Anyhoo, enough witter from me. Sending e-hugs and sisterly solidarity to you lot, and to anyone following this thread who hasn't posted, because you almost certainly need some Mumsnet love too.

Bright blessings and buttered toasted teacakes. xx

Positive38 Sat 16-Feb-13 11:07:29

alma ..thanks darling for kind wishes i think u are going to be ok..i reckon be mon for u as mine was 10days....sending positive vibes dolly.

ordinarygirl u are funny ha ha like your post tks hun i do feel worn out it defo takes its toll its like our future was in someine elses hands..waiting for that call.
i wldnt wish that on my worst enemy.
i am rooting for u darling....ill be back on nxt week xxx

BadMissM Sat 16-Feb-13 14:47:57

Positive38 PHEWWWWWWWWWWWWWWW! breathes sigh of relief for you! See, it was all well worth it in the end.... my NHS result was 1 in 15...and my Harmony less than 1 in 10,000....

Alm83 Just hanging in there for you now.... fingers and toes crossed xxxx

OrdinaryGirl I'm sure everything will be fine, and might be better to have the Harmony before the NHS if yours is anything like mine!

Mumsnet has been a good thing for me too...would never have found out about all of this if I hadn't joined... and have actually met up with some local Mumsnetters too...

I'm hanging on in there, 17+6 today...waiting for my anomaly scan next...
Fingers toes and any other extremity possible crossed for all of you waiting on results xxx thanks

Positive38 Sun 17-Feb-13 00:24:15

badmiss thank u.ill never do nhs screening again my nerves wont hold up.

me too keeping everything crossed for anyone waiting for results......

im 14+4 today and finally enjoying my pregnancy.xxx

Positive38 Mon 18-Feb-13 11:46:18

Alma thinking of you today have you heard at all? xxxxxx

alm83 Mon 18-Feb-13 12:02:39

Hi All,

I still have not heard.... I am glued to the phone and so nervous! Positive38 what time did you have your call? I think the waiting is worse the closer you get to 2 weeks....

OrdinaryGirl how are you coping? I believe you had the test the same day as me? Have you heard anything today? .... Oh dear I need my nerves to hold on for me!

Thank you all for your support!!!
Xxxxx

alm83 Mon 18-Feb-13 13:13:16

Dear ladies,
I am very happy to announce that we just got our results and everything is fine! We are soooooo happy! I got 1:10000 for all three trisomies.... Thank you so much for your support! It has been great having your kind words all the way through... Now i believe is only OrdinaryGirl expecting her news?? Good luck! Xxxxx

BadMissM Mon 18-Feb-13 16:53:36

Alm83 Waaaaahhhhaaaayyyy! That's suchgood news. You must be so relieved!

OrdinaryGirl Heard anything yet?? xxx

Positive38 Mon 18-Feb-13 19:52:17

alma thats just made my evening.i am soooo happy for u.isnt the wait just the worse yet the call with the all clear is just the best call ever...did u cry like me .
hope u celebrating tnite with a juice ha ha.

ordinary girl pls let us know when u hear.
thinking of u xxxx

OrdinaryGirl Mon 18-Feb-13 22:51:02

alm83 Soooo chuffed to hear your good news! Hurrah for good news on a Monday grin
It made me feel brave enough to call up for my results (after crying for 15 mins) and sounding DERANGED on the phone to the sainted FMC staff...
And GOOD NEWS FOR ME TOO!!!
1 in 10,000 risk same as you alm83 smile
I asked the lady if the nuchal scan on Fri was likely to throw up any wild cards, given the Harmony result, and she said no, because apparently the Harmony test is more reliable than the nuchal.

Cried on husband for another 15 mins after the call. It turns out there was a lot of anxiety bubbling away under there. I burst into tears with my team leader earlier about something unrelated, and he was so traumatised he came up to my desk, silently cut into his Mars bar and gave me half.

Think everyone is going to be relieved when I ease up on the Lady-of-Shalott-tortured-personal-crisis face. Though Mars bar was extraordinarily comforting.

Relief is indescribable. Will go to my NHS scan on Wed with a much lighter heart.

So I'd just like to say before I drop off to sleep...
THANK YOU BadMissM thanks alm83 thanks and Positive38 thanks for your warmth and strength and support over the last couple of weeks. At a time of intense pressure, you have been such a resource and I've been hugely encouraged by your stories and your honesty. smile

Enough from me....Night night, sleep tight. Beeg hugs you lot. xxx

BadMissM Tue 19-Feb-13 13:16:22

OrdinaryGirl Soooooooooooooo glad to hear your great result! I was unbearable, in the week leading up to going, even worse in the two weeks between, and had to have my bf (luckily still in London) to come with me to get the results, as I was a giant bag of nerves, and couldn't afford for DH to come with me!

Mars bar must have been a nice perk, though!!!

It makes you breathe a sigh of relief when you get the results though, I have been so much more happy and relaxed with my pregnancy since I went to FMC.

No problem, know how hard it all is thanks

The only way I found out about all of this was through the stories and honesty of others who had done this, so just thought would give some back!

Positive38 Thu 21-Feb-13 22:18:52

ordinary girl omg ive just had a cry for u because i was exactly the same and i am soooo happy for u i cant tell u.

that build up of stress.and worry and.anxiety needa.to release and u with mars bar to hand did just that. i told u i was a crumbling mess on kitchen floor after call.

sorry i missed your update finally got a temp role today so full on busy.like u i amnow enjoying being pregnant.and boy my bumps popped out.

u ladies have been such a support i think we have all got through this together.

biggest love to all of us xxxx

LemonPeculiarJones Tue 26-Feb-13 15:03:55

This thread has been so reassuring for me. I'm going in for the Harmony tests and a scan on Thursday.

Our risk of Down's is 1:397. While this is considered low risk it feels quite borderline to me.

I know it could be much worse but with DS1 the results were 1:4000.

I'm trying not to obsess/cry/keep myself up all night with the stress of mor wondering and waiting. Anyone have any tips for that?! sad

HCG was 1.3, Papp-a 0.6. NT 1.1. I'm 40.

So so worried.

Gatorade Tue 26-Feb-13 18:32:36

Hi All

I had the Harmony test today...so starts the long wait for the results! Did everyone else have to wait the full 2 weeks to get them back?

My background is that I am currently 12+4 (according to todays nuchal at the FMC), I'm 29 and I have a risk in this pregnancy of 1:68 for DS. HCG 0.8 MoM, PaPP-A 0.43 MoM and NT of 1.7. This combined with my previous history of a DS pregnancy and an echogenic nasal bone (which I was told may calcify within a week and be a present nasal bone) resulted in the higher than I would have liked risk.

This is my third pregnancy, my first resulted in a 1:3 risk with subsequent CVS confirming DS, my second resulted in my lovely 12 month old DD (we had a risk factor of 1:2200 for that pregnancy) and now this one which have thrown another curve ball!

I decided against immediate invasive testing for the time being (as 1:68 seemed so much better than the 1:3 with my first pregnancy and I am worried about CVS risks) so I have opted for the Harmony.

Did the rest of you tell your NHS consultant that you were going to have the Harmony test performed? I have an appointment with mine tomorrow and I don't know how much/little she will know about it.

Lemon good luck with your scan, I hope you get better results than I did!

BadMissM Tue 26-Feb-13 19:26:37

Gatorade I had a high risk of DS with a previous pregnancy, and went for an amniocenteisis, which went wrong, It turned out the blood test was wrong, and I didn't need it. This is why I went for the Harmony Test....

Told my consultant that I was going for the test. One knew all about it, and knew Prof Nicolaides (which begs the question, why didn't they suggest it?), and the other had never heard of it...

I waited the 2 weeks, but that was over Christmas...

LemonPeculiarJones My final NHS risk was 1 in 15, and I'm 45.... and I was fine xxx

LemonPeculiarJones Tue 26-Feb-13 21:06:16

Thanks BadMissM that's very reassuring. Brilliant that all is well - congratulations smile How many weeks pg are you?

Gatorade thanks! Am looking forward to my Harmony blood test/scan but the wait will be hard afterwards....Did you have the Prof himself for yours?

Spoke to a specialist midwife today who said that while my blood results weren't wildly out, it was more to do with the relationship between the two: elevated HCG and low Papp-a.

Not reassuring but answered my question confused

Roll on Thursday.

Gatorade Thu 28-Feb-13 08:59:25

I was very sorry to read about you previous loss badmiss, hopefully awful situations like that can be avoided in the future for potential DS diagnosis with the wider use of the Harmony test.

I had a long chat with my consultant yesterday and she knew a lot about the Harmony test and expressed regret that the NHS can't offer it yet as not everyone is fortunate enough to be able to fund private testing. She hopes that it will be offered under the NHS within 5 years.

My consultant had another look at the baby and thinks she can see a nasal bone (baby was being much more cooperative), her gut feeling was that the baby doesn't have DS or any other chromosomal problem. Only ten days left until Harmony results.....

I didn't see the Prof himself this time Lemon, from memory he works on Wednesdays at the FMC (he did my CVS in my first pregnancy so I have met him before, he has an 'interesting' bedside manner but I like him and how blunt he can be,I'm not one for a too softly softly approach in these situations!).

LemonPeculiarJones Fri 01-Mar-13 08:48:36

My scan and harmony tests went very well at the clinic yesterday smile From the scan alone (where they take multiple relevant measurements) everything looked ok, absolutely no markers for Downs.

They also redid the hormone blood tests the nhs did - and my results were nearly perfect this time! HCG at 1.1 and Papp-a at 1. Seems so strange that there could be such a discrepancy (before they were 1.3 and 0.6). Perhaps the machines were more accurate at the FMC or maybe these hormones fluctuate?

So the lovely Dr Maria recalculated my odds at 1:1654. I was so relieved I burst into tears! She said the only reason the odds weren't in the higher thousands was my age (40).

So I feel greatly reassured and confident that the harmony tests will probably come back ok.

I feel so lucky that this service is out there (although madly expensive) - a no risk test that can give so much reassurance.

Gatorade Fri 01-Mar-13 11:19:42

That is brilliant news Lemon, it is all looking very positive.

I also had very different PaPP A and HCG MoM results between my NHS ones and FMC ones, there was about 2 weeks difference in timing of the blood being take but I thought due the fact they used MoM and not simply absolute numbers then the results should be similar! Clearly not though.

My FMC results were actually worse than my NHS ones by a long way.

LemonPeculiarJones Fri 01-Mar-13 11:56:01

Thanks Gatorade smile

How strange that there can be such a difference between one set of tests and another. I assume the hormone levels fluctuate - they must, surely? It can't all be down to different machines and techniques? Impossible to tell.

Well, we both just have to cross our fingers and wait now! When do you find out?

I put a thread about the Harmony tests in Pregnancy because I think these tests should be as publicised as possible.

Gatorade Fri 01-Mar-13 12:36:31

Great idea to put a thread in pregnancy, if it wasn't for mumsnet I wouldn't have known about the FMC in my previous pregnancy and subsequently the Harmony test. It really is amazing how science is advancing and the more people who know there are alternatives to CVS/Amnio in certain circumstances the better.

I had the blood taken for Harmony on Tuesday, so possibly another 11 days, however the doctor I spoke to said they have been coming back on average after 11 days so I'm hoping I'll get them slightly earlier. It's a horrible wait, but with great results like yours I wouldn't be too concerned.

LemonPeculiarJones Fri 01-Mar-13 12:49:30

Hope your results get back earlier than expected Gatorade smile Waiting is so hard....I have another 13 days. I am pretty confident that all is well but you never know.

Fingers crossed for great news for both of us.

Lilbob Sat 02-Mar-13 23:24:03

Hi all I just wanted to say thanks who have kindly posted posts on here about the harmony test.
I went for mine on Thursday after reading positive comments about the Fmc in London. My story basically is that I am 40 years young, first pregnancy, and ds has always been on my mind not only due to age, but because my dh niece has ds.
I went for a nuchal scan on the nhs on 22/02/2013 and was to my surprise told that they were unable to do this has I was further on than what I and everybody thought 14w+3d. I was shocked as I knew my dates were 100%. So a basic scan was conducted with no abnormalities detected. It took around 10 minutes.

I was disappointed as i so wanted the nuchal so decided to take the plunge travel 250miles down to London and pay £550 for harmony test plus train fare. Unfortunately my outcome was not as pleasant as others on here.
After an anomaly scan lasting at least 45 minutes, we were told the bad news, our advice was not to do harmony but to come back on Wednesday and get a cvs. This was such a shock, they told me that according to their measurements I would be 14w+1day on that day, which made more sense as this ties in with my dates. Also my nuchal fold measurement was 4.9 mm, the fumer is in range but at the bottom of the scale. We were told chromosome abnormality or heart defect that can't be picked up yet.
As we were not local to London we did not know what to do, we were confused, so we decided to still go ahead with the harmony and take it from there.
On the positive I thought the scan was excellent and thorough well worth the money, I would definitely recommend going private as opposed nhs for important scans. However the negative about this experience was the lack of support after being told this.
I am a very emotional person and took this hard and was very upset, we felt under pressure to make a decision very quickly. Albeit we did.
We sat waiting for the lab girl to take my blood, and I was fighting back the tears, I just felt things could of been explained more or had someone on hand to deal with situations like this. I thought it was clinical.

Now the wait... I knew I was classed as high risk, but I never once was negative about it, now that happy go lucky attitude has disappeared.

Maybe I was just unlucky but I just wanted and to be honest I "needed" to tell my experience . However it's comforting to read everyone's good news from all your results.
I hope I can be one of those too.

LemonPeculiarJones Sun 03-Mar-13 16:38:33

Oh bless you lilbob that sounds a really difficult experience. The clinic is so excellent in so many ways but its a shame they didn't have anyone there with expertise to support you after such troubling news. So sorry to hear that.

I really hope you get good results too. Fingers crossed for you thanks And this thread can be a safe place to come and vent and get some support.

How much longer do you have to wait until your Harmony results come through? 11 days for me. Waiting is so hard isn't it? As much distraction as possible is the best way but sometimes it's tough to keep your mind from obsessing!

BadMissM Tue 05-Mar-13 12:34:22

How's everyone getting on with the wait?

Lilbob, sorry to hear it didn't go so well, and thanks for sharing xxxxx

Fingers crossed for everyone smile

Gatorade Tue 05-Mar-13 13:49:07

The long 2 week wait seemed to be passing quickly until today (I had the blood taken a week ago today) but for some reason it is all I can think about now!

From reading through this thread quite a few people seemed to get their results at 10 days, this would be Friday for me, it would be lovely to have the results before the weekend.

I am however still very much in two minds about what I will do if the results come back positive for DS, our first baby had DS (confirmed via CVS at 13 weeks) and we decided to continue with the pregnancy but sadly lost him at 20 weeks pregnant, most likely due to significant heart problems. Now we have DD (12 months old) I feel an awful lot of responsibility towards her current and future lifestyle and how that could potentially be more difficult with a sibling with DS.

DH I think would prefer to terminate as he is terrified of another later loss. I can't imagine being pregnant again as I have awful Hyperemisis and spend a lot of time hooked up to a drip in hospital and I am not sure I could put myself, DH and DD through this again.

Sorry - that was a bit of a brain dump!

Lilbob I am sorry you didn't have a positive experience, based on my first pregnancy I think that no matter what care you get it feels awful when you are faced with potentially bad news. Good luck with the results.

BadMissM Tue 05-Mar-13 17:32:28

Gatorade It's never an easy decision, I had decided before I went for the Harmony Test that I coudn't go through with the pregnancy, more for DD's sake than anything else....

Only you can make that call, whatever anyone else says or thinks....

Fingers and toes crossed for you!!!

annamelissa Tue 05-Mar-13 20:10:33

Hi there! Thanks to everyone who has added to this thread and has shared their experiences both positive and negative, really helpful. I went today for the Harmony blood test at FMC... Thankfully I only work round the corner so not far to travel. I'd already been there for a viability scan at 8 weeks, which I found very reassuring. Today I had another scan to check baby was alive and all ok, which thankfully it was, and they took the blood - I've another appointment in just over two weeks to get the results and have the NT scan. Generally I found the staff there very professional and efficient, and personally I'm very glad I found FMC as I've found it reassuring. However, I'm very grateful to those of you who had negative experiences for sharing as it certainly helps be a bit better prepared just in case... Fingers crossed for results, will let you all know! X

Gatorade Wed 06-Mar-13 12:31:22

Hi everyone!

The results are in....I am delighted to report that the results came back with a less than 1 in 10,000 chance of the baby having any of the three main Trisomies. I can finally start to enjoy being pregnant!

Facts and figures for those of you who want them (I know I was hungry for this data when I was waiting for the results!)

My initial FMC results came back as 1 in 68 (largely because I have had a previous DS pregnancy, low PaPP A and a un-calcified nasal bone).

Interestingly my NHS results (performed the day after the FMC results) came back with a 1 in 550 result. I talked to my consultant about this and she explained that the FMC ones were lower due to the lack of nasal bone being taken into consideration. It is also worth noting that my NHS bloods were vastly different to the FMC ones, there was a two week period between the two samples being taken but given they are both expressed in MoM I have no idea why - the relationship between HCG and PaPP A was however similar in both.

I had my Harmony test bloods taken on 26th February 2013, the results came back today (8 days after the blood was taken - much quicker than expected). I found the FMC staff to be professional and incredibly helpful and compassionate. I wouldn't hesitate to recommend them to anyone based on my experience.

Good luck to those who are still waiting for their results, if anyone has any questions about my experience I am more than happy to share any other details.

BadMissM Wed 06-Mar-13 23:20:10

Gatorade So happy for you! I'm so glad you have had a good result! xxxx

Annamelissa It's hard waiting, but well worth it!!

LemonPeculiarJones Fri 08-Mar-13 10:21:56

Gatorade hooray! So pleased for you - fantastic news! thanks

As you say you can enjoy your pregnancy now. Thanks for updating!

Gatorade Fri 08-Mar-13 10:58:42

Thanks Lemon, I hope you get your results back early as well, are you coping ok with the wait?

LemonPeculiarJones Fri 08-Mar-13 11:08:00

I'm doing ok thanks Gatorade smile I felt so reassured by the FMC scan & bloods that the wait isn't too bad.

Would love to get the results back earlier too.....it's 8 days since my appointment today so fingers crossed for a call later!

BadMissM Fri 08-Mar-13 12:34:10

LemonPeculiarJones Fingers crossed for you!! Hope it comes soon! They are very reassuring...

LemonPeculiarJones Fri 08-Mar-13 12:55:15

Thanks BadMissM smile

LemonPeculiarJones Mon 11-Mar-13 10:10:14

grin grin grin

Called up this morning (heart hammering away with the hold music....!). 1:10,000.

So relieved! What a fantastic opportunity it is to have these tests, utterly risk free.

Fingers crossed for you annamelissa smile

Lilythepink3 Mon 11-Mar-13 12:55:21

Hello,

Can I join you? I have been hanging round this thread since I found out my NHS combined nuchal results. Thank you so much for everyone sharing your stories as without your posts I would probably never have gone for the Harmony test. As it is I had it 9 days ago in Manchester (www.thisismy.co.uk - think they also have clinics in Leeds, Sheffield and Hull).

I am totally stressed, the wait is torture, I can't tell whether the morning sickness is getting worse or I am just retching because of the nerves! I have yet to have a problem free pregnancy - twin loss at 21 weeks due to pre term labour, perfect DD born prem due to PROM, MMC at 11 weeks, 2 chemicals - lots of tests no reasons found. When I got these results I just couldn't believe I had something else to add to the list of pregnancy stresses, I really just wanted this time to be a positive experience.

NHS results - risk 1 in 140
Age 37
Nuchal - 1.8 (1.0 MoM)
Papp-a - 0.84 MoM
HCG - 3.13 MoM

The private scan was really good and said they could see nasal bone etc but I am struggling to stay positive with those blood results.I am clutching at straws and hoping that the result has maybe been affected by the fact that I am taking progesterone (cyclogest), also the NHS scan put me 3 days ahead and they used those dates, I definitely know my dates, although I'm not sure 3 days will make much difference to that HCG level.

The clinic have only just started doing the test so they couldn't be very specific about when the results would be back, one person said 10-14 days the other said 10-14 working days! I'm jumping out of my skin everytime the phone rings.

Good luck to all those waiting on results!

LemonPeculiarJones Mon 11-Mar-13 13:03:23

Hello Lily smile

Waiting is a nightmare isn't it! My results came back (all good!) today and that was an 11 day wait (including weekends). Although hang on, you went to a different clinic <duh> But the wait seemed pretty interminable......distraction is key.

I think hormone levels can fluctuate - my Papp-a was 0.6 according to the NHS, but bang on 1 at the FMC!

Good luck. And a friend of mine had odds of 1:25 for DS. She had an amnio - no abnormalities at all (and now a ridiculously gorgeous, nearly one year old girl!).

Lilythepink3 Mon 11-Mar-13 14:10:01

Thanks Lemon, is encouraging to hear other's experiences.

Congratulations on your results, the relief must be amazing!

I'm hoping my clinic will be about the same as FMC with regards to wait time as I figure the lab in America must process them all the same surely? I know that there will be at least a day extra as my blood had to go to a lab in London first before boarding the plane. I just wish the bloods had a tracking number that I could follow online!

The clinic told me that I would have the results by next Monday, that is the day before my daughter's birthday, just praying for good news.

LemonPeculiarJones Mon 11-Mar-13 14:11:18

Fingers crossed for you Lily.

Gatorade Mon 11-Mar-13 16:07:40

Massive congratulations Lemon, that is brilliant news, I'm delighted for you.

Welcome Lily, I'm sorry you have had to find yourself here, but wishing you the best of luck with your results.

LemonPeculiarJones Mon 11-Mar-13 18:10:26

Thanks Gatorade smile We're so happy, can really look forwards now!

Lilythepink3 Tue 12-Mar-13 11:14:47

Thanks Gatorade and congratulations on your results!

Today has been 10 days since the test, wish they could be more specific about when they will get in touch, scared to go out the room in case the phone rings!

Lilythepink3 Tue 12-Mar-13 18:32:53

Got my results this afternoon, good news! My clinic don't give a 1 in x result , they just said low risk (99.9% accuracy).

So relieved!

Good luck to all those waiting for results.

LemonPeculiarJones Tue 12-Mar-13 19:15:38

Fantastic news Lily! It's such a relief isn't it. Congratulations smile

BadMissM Tue 12-Mar-13 20:01:56

Lily My NHS result was 1 in 15.... my Harmony 1 in 10,000! But it is such a relief when you find out!

Tasmina Tue 12-Mar-13 20:47:49

Hi,

I was just wanted to say that this thread has been brilliant in helping me cope over the last 2 weeks.

12 days ago I received a risk of 1 in 8 for Downs due to low PappA. My scan was good but my bloods were out. I'm 42.

I have had 6 miscarriages, including losing twins at 12 weeks last October, so I was afraid of having invasive testing. Thanks to this thread I found out about the Harmony test, and I managed to get an appointment at ThisIsMy in Manchester 9 days ago.

Today I received my results which gave me a revised really low risk of 0.01%.

I just wanted to share my story as I know reading everyone elses experiences, it has helped me get through this time.

Lilythepink3 Tue 12-Mar-13 21:05:26

Thanks Lemon, have been feeling so nauseous with nerves so was so nice to eat my dinner without feeling like I need to be sick! I think I can finally release the bump from my very tight clothes & get the maternity clothes out. Am 16 weeks so will be nice to tell people now.

Hi BadMissM, congratulations on your result, is amazing to go from 1 in 15 to 1 in 10,000! If I ever get pregnant again I will save my pennies from day one to pay for harmony, don't think I could go through the fear again!

Lilythepink3 Tue 12-Mar-13 21:16:00

Hi tasmina, congratulations! I also received my result from Manchester today, I nearly jumped out my skin when Judith called. They said there were just 2 ladies who had done the test with them so I think our blood made the journey together!

I have also suffered from miscarriage & twin loss, it is so hard to get past those negative experiences so it is such a relief to get good news in a pregnancy!

Good luck with the rest of your pregnancy.

Tasmina Tue 12-Mar-13 21:44:18

Thanks Lily. Judith said I was only the 2nd blood test they'd done, so you must have been the 1st.

Its such a relief. I wasnt expecting to hear until at least the end of the week. I'm so happy we both managed to get good results.

Good luck with your pregnancy too.

Gatorade Tue 12-Mar-13 22:20:27

Congratulations Lily and Tasmina, great results, I'm delighted for you both.

LemonPeculiarJones Wed 13-Mar-13 09:51:16

Congratulations Tasmina! Great news smile

Tasmina Wed 13-Mar-13 19:33:38

Thanks Gatorade and Lemon. I finally feel like I can start to relax and enjoy this pregnancy smile

BadMissM Thu 14-Mar-13 18:54:55

Congrats to Lily and Tasmina!!! I didn't know they did it in Manchester (would have saved me 2 x 600 mile round trips....)

Jane1984 Mon 18-Mar-13 21:42:28

Hi does anyone know of any places in the west midlands that do these tests? Would be so much easier than travelling to London....Ta

LemonPeculiarJones Mon 18-Mar-13 22:15:05

Hi Jane

I don't know but a good place to try for info is the ARC helpline (Antenatal Results and Choices). The number is 0845 077 2290.

elaine0612 Wed 20-Mar-13 15:29:33

Try Midlands Ultrasound and Medical Services in Birmingham, I think they offer it. Best of luck

Jane1984 Fri 22-Mar-13 23:06:41

So what is the totat cost for the harmony and nuchal??

Gatorade Sat 23-Mar-13 17:30:43

Hi Jane, at the FMC I paid £180 for the nuchal and £400 for the Harmony test, £580 in total.

frogchops Sun 24-Mar-13 09:42:57

Hello, have come across this thread in the hope that someone can offer advice....have been given a 1:140 chance of downs and am in a horrible position wondering about amnio/harmony etc. I know harmony is the obvious choice but cost is a big factor. It's upsetting me that I can't afford to just do this without thinking, but I'm arming myself with all the info. Firstly does anyone know of a closer clinic with does the same or similar test as FMC London?im in the midlands. Any info u have re costs would be great, I'm going out of my mind :-(

RufousBartleby Sun 24-Mar-13 14:00:21

Hello Frog - MUMS in Solihull Birmingham definitely do it:

mums.me.uk/nipt-non-invasive-prenatal-testing/

Agree it is terribly expensive. If you do decide to go for it they are a fantastic clinic though.

BadMissM Sun 24-Mar-13 17:15:00

That said, worked out cheaper for me to go to London twice to the FMC than to go locally. I paid £180 for everything at the FMC, plus 2 x train fares to London....

BadMissM Sun 24-Mar-13 17:16:29

Just looked at MUMS prices...owch! So, if you can get it for £180 at FMC even with train fares, would be cheaper. I'd ring the FMC and see if you come within their guidelines for having it at £180....

frogchops Sun 24-Mar-13 17:29:25

But at fmc its not £180 its £400 plus £180. Isn't it,?

Gatorade Sun 24-Mar-13 19:54:10

I'm sorry you have found yourself here Frog, good luck with whatever you decide to do.

For what it's worth I think you would be too late for FMCs 'deal' even if it is still running as I imagine you are over ten weeks as you already have your risk score.

One thing to consider is whether or not you would feel better if you went somewhere like the FMC or MUMS and simply had a more detailed scan which factored in more variables, potentially resulting in a reduced overall risk (although by way of warning mine went the opposite way and I subsequently had the Harmony test, luckily getting the all clear). You potentially could the avoid having to have the Harmony test.

Another factor is what you would do if the results came back positive for DS, I went for the Harmony as I was leaning towards continuing with the pregnancy either way and therefore felt even stronger about wanting to avoid invasive treatment but felt I needed to know. I had continued with a previous pregnancy after a DS diagnosis but sadly our little one didn't make it to term.

I wish you all the best in this hard situation

frogchops Sun 24-Mar-13 20:09:47

What do they call a more detailed scan, I'm looking at the price lists and I'm not sure which one i would need. Not sure either which is suitable at 14weeks. The harmony test is out due to money issues but if a more detailed scan showed other problems or increased risk, I would go for amino. I'm thinking of asking my mw if there's anything I can have on nhs to get a bit more clarity.... I'm sure shell say no as this would have been offered to me by now surely?

BadMissM Sun 24-Mar-13 20:25:28

Frogchops If you go to FMC at 10 weeks, they do scan, then nuchal scan/harmony for £180 altogether. I'd also check around as different places seem to offer it at vastly different prices...

Gatorade Sun 24-Mar-13 20:32:36

A lot (but not all) of NHS scans don't take into consideration soft markers (e.g. Nasal none presence) whereas the majority of credible private clinics such as the FMC do factor these into their risk assessment. It is however worth noting that soft markers are a slightly controversial as some researchers are not sure if they are reliable enough to factor into assessments, although the vast majority of medical research papers I have read do support the inclusion of them in assessments.

I suggest you phone the FMC for a chat to see what they could offer and if it would help you. You also should check what was factored into your own NHS scan with your midwife.

You are in a difficult situation which my consultant described as 'no mans land' where your risk is not ridiculously high and potentially lower than the miscarriage risk of a CVS or Amnio (by contrast my first pregnancy was 1 in 3 and I couldn't bring myself to have an amino with a 1 in 68 in my third pregnancy).

frogchops Tue 26-Mar-13 13:02:35

I think I've decided to have a marker scan done privately before I decide on amnio. They say it can reduce risk by no more than 3 times though so my maximum would be 1:420 at best. I know that maybe markers aren't the most reliable but I'm hoping they will either make me feel better or convince me of amnio.

Diege Tue 26-Mar-13 14:58:08

I can confirm that the fetal midecine centre's harmony/nuchal deal ofor £180 is still on. Rang this morning to book alongside my already pre-booked nuchal and they squeezed me in early next weds morning (10 weeks plus 5).
The results from the harmony will be back so I'm told by the day of my nuchal scan 2 weeks later. I'm told they take bloods with the nuchal too. Just wondering why there's a need for bloods (and indeed nuchal) if the harmony has come back by then? confused. I'm presuming it's so they have data to compare the accuracy of both methods? (and hence why they offer the deal in the first place?)

frogchops Tue 26-Mar-13 15:38:13

Maybe it's because I'm 14+4 that I can't have this? When I called they said it would be £400 plus £150 for scan???

Gatorade Tue 26-Mar-13 15:40:45

Good luck frog I hope you get a good outcome with the detailed scan.

It's good to know its still available for those who need it diege, good luck with your testing. I think you are right about why they do both (comparing results etc), but also because there are many other adnormalities that could be detected by the 12 week scan and bloods, other than the three common chromosomal problems that the Harmony test identifies.

Gatorade Tue 26-Mar-13 15:41:39

That's right frog, I think you need to be under 11 weeks (or 10+x) to qualify.

frogchops Tue 26-Mar-13 15:42:24

Yes I've just called. It's only for between 10 and 10+6 people. :-(

frogchops Tue 26-Mar-13 15:43:58

Hopes were well and truly up then!!! Am even doubting the marker scan now..,,I'm so confused!

frogchops Wed 27-Mar-13 17:32:10

Cutting an extremely long story short (i apologise-ive put this on so many threads!!) am possibly in the position to consider harmony testing. I won't bore everyone with how/why and the details you've already read, but now I'm looking for opinions on this and if anyone has/knows of anyone who has had it. :-/

Diege Wed 27-Mar-13 18:39:32

That sounds good progress frogchops - are you having it at the fmc?

frogchops Wed 27-Mar-13 19:13:52

Maybe, or the MUMS clinic is closer to me although is more expensive. My DP doesn't want to have it based in cost as he says we can cope with the risks of both downs and amnio if necessary. He's not me though, and I'm not sure I can.

LemonPeculiarJones Wed 27-Mar-13 19:23:07

I've had the harmony tests done frogchops, at the FMC. Brilliant. Expensive yes, but it put my mind at rest before I even had the results back, the scan was so thorough and reassuring. They checked for multiple markers and all looked good.

After an 11 day wait for results they came back at 1:100,000 for Downs and the other two trisomies.

Other than cost, which is certainlynconsiderale, what questions or concerns do you have?

LemonPeculiarJones Wed 27-Mar-13 19:23:53

*certainly considerable - gah! smile

Diege Wed 27-Mar-13 19:26:59

I agree personally frogchops that the harmony is a better alternative on many levels than the amnio. I've got 5ds (currently pregnant with number 6) and have, in the course of my pregnancies pretty much had all types of tests, from amnio to nothing at all. Have also had my fair share of false positives from scans and blood tests. The Harmony is not without fault (5% failure rate) - and as one of the few who had a culture fail with my amnio,I know how frustrating being in that % can be, but fingers crossed my result from the harmony will be straight forward. Booked in for next weds at the fmc so will let you know how it goes!

Gatorade Wed 27-Mar-13 20:15:42

I've had the Harmony test frog. I am in the slightly unfortunate position of being able to directly compare it to the CVS (which is of course similar to an Amnio).

In my first pregnancy I had a 1 in 3 risk of DS after NHS screening, the FMC rescanned and gave me the same risk score. I had a CVS as the Harmony test wasn't available (a few years ago). I found the CVS uncomfortable but not painful, I was however terrified of the miscarriage risk. We had already decided that we would continue with the pregnancy but I needed to know. Our baby did have DS, we continued with the pregnancy but sadly he died before term (completely unrelated to the CVS). I went with the flow and had the CVS before I had a chance to really consider the risks, I was much more informed in subsequent pregnancies.

I went on to have a healthy DD in my next pregnancy, FMC scan gave me a 1 in 2200 risk which I was delighted with, she is now 13 months old.

With this pregnancy I was given approx 1 in 550 risk by my NHS scan (which I was pleased with) but then 1 in 68 with FMC (soft markers). Personally, a 1 in 68 risk wasn't too bad, I certainly wouldn't have considered invasive testing but had the Harmony test as I felt I needed to know.

The Harmony test results came back with a less than 1 in 10,000 risk for each of the 3 tested chromosomal abnormalities, the wait was difficult but eliminating the misscarriage risk was worth it.

Good luck with whatever you decide to do.

Hovis1980 Thu 28-Mar-13 13:51:37

I found this post a few days ago and it really helped to inform my choices after a 1 in 40 risk factor from the NHS for Downs. I went yesterday to the Fetal Medicine Centre for the Combined Test plus the Harmoney Test. As others have said there was a long wait (about 2.5 hours) but the reception warned us in advance so we went for dinner and then called a couple of times before coming back when our turn was up.

When I arrived bloods were taken and immediately analysed A little while later I was then scanned... and what a difference compared to the NHS. They look at absolutely everything. I had no idea there were so many soft markers that a first rate sonographer could look at to better assess your risk of Downs. And everything they did was checked and re-checked.

After putting this additional information into their risk assessment tool (e.g. presence of a nasal bone etc...) they then put my risk at 1 in 9072! My husband and I are thrilled. As mentioned by others the Prof we saw designed the combined test and is THE expert in his field. I have absolute confidence in his team compared to my NHS sonographer who struggled to get a nuchal measurement and then only took one measurement without re-checking (she measured 2.9 compared to the 2.2 which was checked and re-checked by the Fetal Medicine Centre).

We've now decided not to go for the Harmony Test. But if our result had been any higher then I think we would have still gone for it. The combined test was £180 and if we'd gone for the Harmony Test it would have been £400. I would say this is the best £180 we've ever spent. After the NHS we could hardly sleep for worry. I'd definitely recommend giving it a go and wish everyone out there who's got a high risk factor the best of luck in whatever they decide to do.

Diege Thu 28-Mar-13 17:22:00

Thanks for your story Hovis, that's very encouraging. I have the combined booked myself and was wondering when they did the bloods on the day. Do they discuss the findings from the bloods before they scan? I am having the harmony 2 weeks earlier anyway as part of the £180 deal, so I am presuming the harmony results will take precedence anyway? (will be back by nuchal day) Must try not to worry of the harmony are 'good' and the nuchal and bloods not so...

frogchops Thu 28-Mar-13 19:44:31

Thankyou for your advice everyone....have booked my harmony. Local to me its £750 but im hoping money well spent.

Hovis1980 Thu 28-Mar-13 21:09:05

Diege - best of luck with your tests. I had an evening appointment so they asked me to come at 5pm to get the bloods done before their lab closed. I then came back for the scan a couple of hours later. They did the scan & then at the end talked me through the final risk factor including the bloods. As you say the Harmony Test has a high percentage accuracy of over 99 percent compared to their combined which I think is 94 to 96 percent. So as you say that's probably the best guide. I really hope it goes well. I slept terribly before the scan & really feel for you as you wait. I really hope it goes ok.

Diege Fri 29-Mar-13 08:58:12

Thanks Hovis smile. I have a history of false positives and soft markers on scans that have never come to anything, so the harmony does seem like a good idea and will put any other 'markers' that crop up say at 20 weeks into perspective. The downside of my history is that I get very very anxious before any sort of scan, so this will be a tough couple of weeks for me. I've made the decision to do this though, and will just have to try and keep as calm as possible.
ps: does anyone know if the FMC is in walking distance of Euston? Map seems to suggest yes, but I know they can sometimes be misleading...Receptionist has stressed I cannot be late for harmony (have to be there for opening of centre ; she fitted me in) otherwise the prof's other cases that morning will be delayed. Eeekkk!!!!

takingachance Fri 29-Mar-13 12:04:05

Hi ladies, this is my very first post :-)
But I wanted to add my experiences here as the information I have gained from this thread has been so influential on my actions in the last month!

Anyway, I am 11+2 with my second child and I am age 39. This was a totally unplanned pregnancy, but a very nice surprise!! I felt that I was a little on the old side and so have been worrying about the increased Down's risk, etc. Things have changed somewhat since my last pregnancy 8 years ago, so it was great to find out about all the new tests now available.

Having read this thread from start to finish, I decided I should get the Harmony test. At the point I made that decision, I was 8 weeks. As I live in the Outer Hebrides (!) choice of clinic was never going to be close. So I decided I would try to book for the FMC and hope I could also qualify for the 'deal' as this would partly offset the cost of 2 flights each way (twice)!

When I spoke to reception, they said (as I had also read on here) that to qualify for the deal I would need to be between 10 and 10+6 at the first scan. As I had not, nor was likely to get an early scan, I checked and rechecked my dates hoping I could get an appointment at the right time.

Well, last week, I arrived at the centre for my first scan. At that point, I was stressing firstly whether there would even be a baby there having previously had a mmc. The sonographer was a lovely lady and very thorough, explaining everything. Baby was there, happily bouncing around :-) and I measured 10+1 so could also go ahead with the Harmony side of things.

I am now half way through the long wait - my next appointment is on 8th April for the NT and Harmony result, so just hoping for the best now...

Strangely, I have my date for NHS NT scan on 3rd, so I don't know if that is good or bad? Good because I get to see baby again, it may give us a heads up if there is anything wrong, but also it may mean more worry...

So sorry for such a long first post! I just thought how much help other people's experiences have been to me and would like to help anyone else who is going through the same dilemmas xx

Diege Fri 29-Mar-13 12:10:42

Hi takingachance smile. I was advised not to bother with the NHS scan at 12 weeks as it could potentially be contraditory based on the things they don't look for. I've cancelled mine, which is quite a relief really as will feel all scanned out by then! Good luck with your harmony results and nuchal. Did the sonographer you saw when having the harmony give any indication about how things were looking, or was it purely to date the pregnancy?

frogchops Fri 29-Mar-13 12:19:33

With nay a short time to wait in between scans, I'm sure if the nhs one did indicate any risk, you will feel relieved to know that your harmony scan is already in place. I had such a low last week, and am still feeling hmm about my risk, but am so much better for knowing what I'm going to do and have the harmony booked....albeit it £750... But so far just for my well being, it's worth it. Am not looking forward to two weeks wait after test, but one bridge at a time!

takingachance Fri 29-Mar-13 12:48:37

Hi Diege - the sonographer just said things were looking fine, but she didn't comment specifically on any of the numerous measurements she took. It looked like she measured the nuchal fold and it's the one thing I nearly did ask her about, but then I thought that maybe it's too early anyway for this measurement to be meaningful.

I think, as you say frogchops, I will have the NHS scan anyway,as it won't be too long to wait then til the Harmony result. It's actually possible that the Harmony result will be in at the clinic by then anyway, as due to timings of when I can get to London, it is actually 2.5 weeks between my 2 FMC visits.
When I had my booking in with the midwife, I tried to explain the Harmony test, but she had never heard of it and she just kept saying it sounds the same as the blood test that is done at the NT scan hmm so kind of feel like I should have the NHS NT scan done anyway so that I am not being a rebel!

The FMC said they would phone if there were any issues with my Harmony result - I assume that means that if it is a bad result they will phone but not if it is a good result. Perhaps I can phone the FMC if the NHS scan is bad...

I just feel so glad that the Harmony test is available for us to hopefully ease our minds or at least make the choice to have a CVS or amnio more informed. You are so right frog chops - the money spent is definitely worth it! I had thought that if my Harmony result is bad I would like to have a CVS done at the FMC as opposed to having to wait for one on the NHS. But I'll cross that bridge if I have to....

When are you guys having the Harmony test done?

frogchops Fri 29-Mar-13 12:55:21

Tuesday for harmony. I'm having it in Birmingham rather than London though as travel is a pain. Im so impressed with the people ive spoken to at the clinic so far though, and i havent even been yet! The feeling of 'what do I do' is awful after a high risk nhs scan, so the good thing is that you won't have this being as your harmony is booked. I'm 15 weeks now so out of the very good deal for 10 weekers bracket!!

Diege Fri 29-Mar-13 13:01:26

Wednesday for harmony for me at FMC then back 2 weeks later for nuchal,bloods, and results.
I'll make sure I ask about getting results early or not by phone. I have a feeling they may ring early too if they can't extract the fetal dna which I know is a 5% risk of the test.

Diege Fri 29-Mar-13 13:03:40

Also taking I had my nuchal measured at 10 weeks in my last pregnancy by sonographer as I was having a reassurance scan after a bleed. She looked because I asked, but said they never go by a nuchal at 10 weeks as it can change quite drastically up to the window they usually do the test, so I'll resist asking this time I think!

takingachance Fri 29-Mar-13 13:25:10

Oh, Diege I meant to say - I don't know if FMC is walking distance from Euston - I arrived at Paddington off the Heathrow Express and jumped in a black cab. I just gave them the address and they took me right to the door. There is no sign outside, just the number on the door so I'm glad I didn't try and find it myself! Taxi was £7 from Paddington and took about 10 mins at rush hour (0815), but as I don't know London at all, I can't help on whether Euston is closer!

I do know that FMC is a short (5min) walk from Oxford street - was loving visiting all the shops afterwards!

Diege Fri 29-Mar-13 13:33:10

Thanks for the heads-up on the 'no sign' taking! I am actually staying overnight beforehand as couldn't bear the 5am train (plus terrified I would be late!). If it's by Oxford Street Ithink I should be ok walking but will my hotel very early to make sure I have lots of 'getting lost' time!

Toptack Sat 30-Mar-13 16:26:23

Just noticed that this test is now available at "this is my:" clinics in Leeds, Manchester, Hull and Sheffield. Still eye-wateringly expensive but may save someone a long trip!

BadMissM Sun 31-Mar-13 13:39:08

Diege It's about a ten minute walk from Euston.... really straightforward. If not, cross the road from Euston station to the bus stop over the crossing and look for buses that go past the end of Harley St, down Marylebone Rd. The 30 does, but I would check here www.tfl.gov.uk/ for others. Put in Regent's Park Station as destination.

You can go by tube, but the number of changes make it a PITA.

If you are coming from Oxford St, the 30 and 73 both come back past.....

The buses also tell you the stops...

BadMissM Sun 31-Mar-13 13:43:21

Diege There is a sign, but it's a little brass plaque....if you print off the FMC's directions leaflet, it's quite accurate!

Diege Sun 31-Mar-13 14:53:40

Thanks*badmiss*! That's reassuring about the short walk; much prefer over the tube if the latter is a faff. I have a feeling I passed it a few yrs ago when I had a meeting at Portland Place - I remember thinking oooh Harley Street...
Will go on walkit.com to get fool-proof directions!!!

Polarbear72 Tue 02-Apr-13 18:20:03

I am having a nightmare... I booked myself in for the Harmony test and the results are inconclusive so I have to go back Friday for another blood test, I will be 13 weeks. I had my Nuchal scan on the NHS last week as I was wanting a comparison and they couldn't do it because the baby was not in the right place and the screen was not clear. All they could offer me was to come back when I am 16 weeks for a quad test. We have told no one that I am pregnant and I am not sure if I can hide it much longer. Feeling like everything is against me. To not have any reassurances from one is bad enough but two is just not fair sad

LemonPeculiarJones Tue 02-Apr-13 22:34:45

Oh no Polarbear poor you sad So stressful. More waiting - that's so hard.

What about a detailed scan at the FMC (or wherever you had the harmony tests done)? Looking for multiple soft markers, nasal bone etc? The scan alone reassured us so much, before we got the harmony results.

Polarbear72 Tue 02-Apr-13 22:48:47

Thanks LPJ

I am due to have a nuchal scan Friday at the FMC so hopefully that will help but I was really wanting to know I was in the clear before telling anyone. I am just finding it very upsetting not getting any reassurances from anywhere. I have explained my concerns to the NHS as I am 40 bit they just don't seem to think that they should re-scan ne as it's not in their policy to do so. I was never out of the scan room from week 6-9 due to suspected heterotopic pregnancy!! Sorry for the woe is me. Had a good son earlier. Thanks again.

LemonPeculiarJones Tue 02-Apr-13 23:23:32

Polarbear we too intended not to tell anyone (other than the close people who already knew) until we had the harmony tests back, but the scan at the FMC was so very reassuring that we announced it the next day smile The harmony test results ten days later just confirmed what the scan had suggested. You might be feeling much more confident after your scan on Friday!

I'm 40 too btw. Age heavily biases the odds we're given, it can be so misleading.

Best of luck.

Polarbear72 Tue 02-Apr-13 23:51:51

Thanks LPJ

It does help hearing your experience.. I shall report back on Friday..

The scan machines at the FMC are much better than the NHS unfortunately so fingers crossed...

lovelylara Wed 03-Apr-13 16:28:36

Thanks for the info.

I have booked the Harmony test at the FMC for £180. However, I'm wondering whether to cancel as the (free!) test offered by UCH, London seems very similar (see point 5 in particular):
http://www.uclh.org/PandV/PIL/Patient%20information%20leaflets/11-14%20week%20scan.pdf

Is that correct, or have I misunderstood?!

Diege Wed 03-Apr-13 16:58:31

Hi! Back from harmony appointment smile. Very impressed with the FMC. The dr who did the scan was gorgeous very professional and did a remarkably detailed scan too. All seems fine, although I panicked a little when baby was dated at 11 weeks (and not the 10 wks 4/5 days I;d thought) as worried that that would make me exempt from £180 offer blush He didn't seem to think so so just paid up and ran grin He did have a look at the nuchal, though just said it was fine,and a few other bits and pieces. Plus he said he's pretty sure it's a girl - based on some complicated angle-theory or summat...
Sooo back now in 2 weeks for results and nuchal. They take bloods for nuchal on day they take harmony bloods too, so will have all the figures in at next appointment. Nervous now!

Diege Wed 03-Apr-13 17:00:45

Will try and look now at your link Lara.

BadMissM Wed 03-Apr-13 18:53:48

So glad it all went well, diege! It's so reassuring!

Diege Wed 03-Apr-13 20:29:05

Thanks badmiss smile. A lot easier to find than I had thought, so thanks again for your directions.Got there 20 mins early and it hadn't opened yet, so decided to go and find a cash point. I think it took me longer to get to the other end of Harley Street than from Euston - what a long street!

Diege Wed 03-Apr-13 20:48:11

Sorry lara, can't open the pdf file confused My computer is old and knackered..

BadMissM Fri 05-Apr-13 17:09:30

Lara, the scan at UCH looks amazingly thorough (my trust don't even offer nuchal/combined), but I'd still say that the Harmony Test offers more reassurance on top of the scan....

Polarbear72 Fri 05-Apr-13 18:04:04

Lemonpeculiarjones I had the scan today and my bloods are fine, no markers that the Dr could see and my risk is 1/1290. I know that's good for my age but I still need those harmony tests to feel really at ease. I must say though that this baby is very, very stubborn. Three attempts today to try and get all the measurements done. Kept hiding, showing it's bum, curling up, turning it's back. No wonder the Dr kept refering to it as a he wink. My husband is pleased and wants to tell people. I have decided to have my 20 week scan done at the FMC as it's just so much better than the NHS.

Diege Fri 05-Apr-13 18:52:03

polarbear I too am considering having my 20 week scan at the FMC after a positive experience there this week. I had a chat with the dr about what they look for as I work in screening and am aware of the controversy over some soft markers (the NHS are finally getting the message and I was worried that the FMC might look for too much if that makes sense? )The Dr reassured me that they too now ignore lots of the old soft markers.This reassures me, plus then fact that the person doing the scan at the FMC can discuss findings. I'd rather that than some stressed sonographer in the NHS telling me I have to see the consultant the following week to discuss the significance of the findings if there is something worrying...
One step at a time though...will get harmony results when I go back for my nuchal at the FMC on the 17th.

LemonPeculiarJones Fri 05-Apr-13 19:31:43

Polarbear that's so great smile Fantastic odds and it is the age factor stopping them for being in the higher thousands (doc at FMC told me this, my odds after the FMC scan/bloods was much the same as yours). Understand you wanting to wait to be extra sure - but such good news!

Good luck for the 17th Diege smile

LemonPeculiarJones Fri 05-Apr-13 19:32:20

*was = were, natch!

Polarbear72 Fri 05-Apr-13 19:34:03

Diege it just seems to me that the Dr's at the FMC are more confident that the sonographer's I have come across in the NHS. I have had a number of problems with this pregnancy which resulted in numerous scans on the NHS which I am now not sure were warranted and I am now refusing NHS tests on that basis. I am not knocking the NHS, they do a great job but they spent all of ten minutes trying to do my NT scan to tell me I was too fat for an adominal scan (hilarious) that an old scar (1cm if that) was blocking their view and that I was to come back at 16 weeks for a quad test, however, I was fighing the scanners off weeks 6-10 and I refused surgery!

Afraid I don't know anything about old markers and new markers.. My bloods were good, NT was 1.6, heart OK, nasal bone there. All the other bits were in the right place so I am hopeful that my Harmony (second one!) will come back OK.

Good luck with your results, my first set failed which just set me right off on a path of doom but the Dr thinks the second set will come back OK.

Polarbear72 Fri 05-Apr-13 19:39:11

LemonPeculiarJones thanks for your good wishes.

Diege Fri 05-Apr-13 20:23:40

I'm sure your results will be fine polar - when are they due back?
This is baby number 6 for me so I have had a lot of NHS maternity care. Like you, I wouldn;t knock the NHS staff , but they are restricted by time, which will inevitably have a knock on effect on the relationship they can build up with 'customers'. I didn't feel rushed at all with the DR at the FMC, asked all the questions I had thought up and more besides,and didn't feel for a minute rushed or like a paranoid mad pregnant womangrin. We're not well off by any means, and the train fare to and from London is a couple of £100 in itself, but think the 20 week scan will be worth saving for (still pretty reasonable - £150 I think?)

Polarbear72 Fri 05-Apr-13 21:16:39

Diege baby number six?! Have you not got a telly?!

This is my first pregnancy and at my age likely to be my only one... Despite two people at the FMC telling me I'll want another!

At my hospital the sonographers switch between the emergency gynae and the normal 12/20 week scans, they always seem to be rushing around. The 20 week scan at the FMC is £200.. I live in the south and it's on my way to work so very lucky in that respect.

I hope your results are good too smile

Polarbear72 Tue 16-Apr-13 17:42:52

Well, my 2nd test also failed and they won't re-test so I am stuck with my NT test at 1/1290. Very disappointed!

iclaudius Tue 16-Apr-13 17:50:56

I had the harmony done on baby number 8 at Christmas . I had private nuchal with bloods which threw up 'intermediate risk' I'd not heard of this before and in fact on the report I got it said 'low' but additional sheet said 'intermediate'
I felt the private scan to be fuzzy and rushed .
I panicked and had an NHS scan at big teaching hospital . Amazing scan great clarity and long and helpful chat with consultant - I cannot recommend the NHS enough. I did feel slightly pressured towards the cvs which I declined and they seemed slightly scornful of the harmony. I opted for harmony anyway and got a screen negative in seven days

iclaudius Tue 16-Apr-13 17:51:20

Polar bear you found very unlucky so sorry about that

iclaudius Tue 16-Apr-13 17:53:10

I had my harmony bloody done at the GPS btw

BadMissM Tue 16-Apr-13 19:23:34

I couldn't get a decent scan of any kind on the NHS, my trust don't even do Nuchal, and when they finally reluctantly gave me a blood test they gave me 1 in 15....I would have pregerred to be able to get a decent test on the NHS. No consultant chat offered despite my age and history. Asked to go to another trust, they said I could if I paid....

I'm so glad I went for the Harmony.... 1 in 10,000.... Put my mind at rest, so much!

Poor Polar Bear !! 2 not working! But the Nuchal result is good xxx

Diege Thu 18-Apr-13 19:18:14

Oh no polarbear that's such bad luck. Were they able to give you any explanation at all? Your nuchal results are indeed super reassuring.

Well had my harmony back yesterday and less than 1 in 10,000 for main 3 trisomies. My nuchal and bloods gave me 1 in 747 for downs which I was very happy with as age-related risk 1 in 37 shock.
Will be having my 20 week scan there as so impressed with staff. Nicolaides rechecked my scan and he was so lovely I have developed a crush blush

lovelylara Fri 19-Apr-13 20:31:50

I had the first part of the Harmony test (i.e. the scan) at the FMC earlier this week. I had had a 7 week scan elsewhere, which revealed a foetus with a heartbeat.

I was lying on the couch looking at the screen and my heart sank a little as I said to the sonographer "Shouldn't it be moving?". She didn't say anything at first and then said it was measuring 7 weeks, to which I blurted out "but I'm around 10 weeks". Then she confirmed it had died at around 7 weeks and got her colleague to check for a second opinion (same result). I burst into tears and they took me to a quiet room for a while. Apparently it is called a missed miscarriage.

She called my hospital to find out the next steps and fortunately they didn't charge me for the test.

Hopefully everyone else will have a good result.

LemonPeculiarJones Fri 19-Apr-13 20:34:15

Oh lovelylara sad

So, so sorry for your loss.

flowers

This is a random question but did you get pictures from the scan they do at the second appointment?

I am having the harmony test on Monday due to having such awful NF test results in last 2 pregnancies that I was advised to go for a CVS with both if them.

Prof N did both of my CVSs and I have to say was extremely professional and compassionate. I have also had dealings with him when he had to advise a relative that her baby would not have survived after birth and he was a wonderful support in such an awful time.

This time I am 9 years older and so risk will be greater and I really don't want to have to go through having a cvs again.

Do be careful of what people say of successful people a lot of the time it can be envy that clouds people's opinions.

It's amazing that this procedure is available now and hopefully all those who have the test will one day mean that if is available routinely in the nhs.

BadMissM Tue 23-Apr-13 16:27:24

Michelle Yes, I got pictures from both!

MadameCastafiore I thoroughly agree... It put my mind to rest!

allibi Tue 23-Apr-13 17:23:01

Dear all, I have found your info on the harmony test v useful and just had the blood test and scan today at the fetal medical center, so thank you!!
However i am VERY concerned that the ultrasounds may carry risks to the babys brain development and that in my experience of using 2 scan centers on harley street, people are not being made aware that there may be a risk. I certainly was not
the American institute of ulatrsound in medicine has safety statements that say ultrasounds should ONLY be used if a genuine medical reason. I was encouraged to do an early date scan that i now regret and am looking to have the nuchal test at the fetal center INSTEAD of the NHS scan rather than doubling up on scans.

please read the following links if you are interested in some articles on this

http://www.midwiferytoday.com/articles/ultrasoundrodgers.asp

http://www.naturalnews.com/038833_ultrasound_pregnant_women_testing.html

http://www.aium.org/resources/viewStatement.aspx?id=34

I for one, am very worried about how these ultrasounds are being used in the UK

Diege Thu 25-Apr-13 11:50:21

Hi alibi I agree with lots of the points you raise. I too am only having one set of scans (FMC). Additionally of course there is the added risk of getting 2 sets of conflicting results if using NHS AND say FMC.
IIRC there are also some concerns abut the increase in the use of dopplers at home, esp with some people using them daily. I think if people choose to have vanity scans, use a Doppler daily that's their choice but don't think the risks are properly publicised by the NHS and as such most people's choices aren't that informed..

TallulahUK Tue 30-Apr-13 09:01:58

Hi - I just joined Mumsnet because I needed to see if anyone has had any experience with a Harmony test that didn't work? I'm just over 13 weeks, and the last two weeks waiting for the Harmony result have been a killer. FMC told me yesterday there wasn't enough of the baby's DNA in my blood and that they need to do the test again (and another 2 weeks wait) but the chances are that it wont work. They could only say the test fails in about 5% of cases and usually if you are overweight (I'm not). My nuchal scan was fine but they told me too yesterday that I had low hormone results from the placenta (Is that HCG?) and with my age 42 the risk of DS is 1 in 9. Am very anxious. Next step would be amnio I suppose if the test fails again as would be too late for CVS. Not sure what is for the best. Any experience of this?

JaneLondon2013 Wed 01-May-13 22:11:05

Dear all, I have found ur info on the Harmony test so useful. I am thinking to call them and to get an appointment. I just made a bit of further research and I was wondering if they have explained to you which personal information will be transferred to the US. Did they make you sign a consent? and what about the treatment of this info in the US - the law must be different from ours (?!). I know it is a v small issue in comparison with the great benefits offered by the test but since it is the DNA which is transferred I would like to be sure that privacy will be protected and the blood discarded once the test has been carried out. hope someone can help with this.

Diege Thu 02-May-13 07:27:28

Hi Janet I do recall signing a consent form. It assured me the blood sample would be disposed of and only used for the purpose for which it was intended. I think there was an acknowledgement that the US data protection system differs somewhat from our own, and that this should be taken into account, but don't remember tbh if the possible implications for this were outlined.
Tallulah really hope you get better luck with the second sample. It's only being overweight that I had heard of too as a factor, so very frustrating. They did say to me at the FMC that most people will get a result second time round although I think there is a poster on this thread who also had the same occurring second time. Let us know how you get on xx

JaneLondon2013 Mon 06-May-13 14:28:54

Thank you so much Diege for your kind reply. I have not decided yet about the test because of this issue. Maybe I should first have the combined test, see how it is going and then decide whether or not to have the Harmony test...

Soopermum1 Tue 07-May-13 23:08:16

hi all

rather minor question about the harmony test at the FMC. do they record the sex of the baby and tell you if you ask?

had blood taken there today and forgot to ask. we want to know the sex this time, so as a plus point, all going well with the main focus of the test, would be good to find out.

elaine0612 Wed 08-May-13 15:01:55

Hi Soopermum1,
I had this done at another clinic and they needed to know within 2 days if you wanted to know the fetal sex. Once the sample has started being processed it is too late to request it. I would call FMC and check.

Diege Wed 08-May-13 18:23:26

That sounds sensible Jane, though bear I mind if it's the FMC you're going to the price goes up quite considerably if beyond 10 weeks (that is if they're still doing the offer).
sooper it wasn't mentioned at all to me at the FMC, and there was no ref to sex on the info' sheet. I know they offer it at other centres, though you have to pay extra. Having said that the dr doing the scan I had before bloods were taken for the harmony was 85% baby was a girl (angle of the nub) - will see if he was right in 4 weeks time!

BryanBeattie Wed 15-May-13 22:05:21

The test is now widely available in the uk. Detection rate 99pc and will also work for twins from 20th May. Prices vary and some centres charge extra for a scan or an amnio if the test is positive. Fetal sexing is 99pc accurate and it works any time from 10weeks
Bryan

BryanBeattie Wed 15-May-13 22:05:36

The test is now widely available in the uk. Detection rate 99pc and will also work for twins from 20th May. Prices vary and some centres charge extra for a scan or an amnio if the test is positive. Fetal sexing is 99pc accurate and it works any time from 10weeks
Bryan

Hazemum Thu 16-May-13 07:51:11

Hello just to add to the original question, I have recently had the harmony test at the Fetal Medicine Unit as when I had my recent 12 week NHS scan/combined bloods it came back with a risk of 1:68. My previous child was 1:500. I was given two options i.e. csv or amino and only at the end was the Harmony Test mentioned. We opted for the Harmony Test and when I had the scan/combined bloods (you need to have this done privately at the Fetal Medicine Unit before you have the Harmony) it came out with a risk of 1:38. Even worse than NHS. However, when Desserie (she was lovely, not too sure of spelling of her name) she said the baby looked normal from the scan and would be surprised if the Harmony Test didn't come back negative. I heard on Monday that the test was negative (massive massive relief) and that there was a less than 1:10,000 risk. Highly recommend Fetal Medicine Unit and hopefully one day the Harmony Test will be offered on the NHS.

RTchoke Sun 19-May-13 19:20:03

Hi

I started this thread back in my first trimester. My NHS combined test was 1:10 for Down Syndrome and I had the Harmony Test at the FMC when it was brand new to the UK. My Harmony result was 1:10,000 which was a great relief although throughout my pregnancy I had m

RTchoke Sun 19-May-13 19:23:27

Sorry posted too soon!

... I had moments of fear because I had not opted for a diagnostic test after my terrible combined test. Anyway, I just wanted to let people know that my baby was born this week and he is healthy and normal and gorgeous. I just wanted to let people know as this thread was so helpful to me during those early, scary weeks.

Lorakk Sun 19-May-13 19:52:40

I am so so glad and happy fou you RTchoke!!!! its a such relief!!!! I am in the same situation you were before. Opted for harmony and didnt go for diagnostic. 24 weeks now and still long way to go. I have good and bad days and hope for the best. Thank you for shearing your experience. Well done !!!!:-)

Aoifebelle Mon 20-May-13 21:02:23

I am so grateful for this thread. I found out about the harmony here and went for the cheaper 10 week scan and test. waiting for the results right now. In the meantime I went for the nhs 12 week scan today. My nuchal scan was high 4.2mm. Based on this information alone, they advised me to go for a cvs, not to even wait for the results of the harmony. I felt very rushed and pressured by the midwife. I left and called the foetal medicine centre. They have brought my second appointment forward to Wednesday and provided me with the opportunity to gather more information before having the invasive test. They have been a real life line. Best 180 quid I have ever spent even though I can ill afford it.

diege Tue 21-May-13 10:10:35

I think you have done absolutely the right thing aoife. Is it tomorrow you have your appointment at the fmc? If so he professor will be there to check results etc and he is very reassuring. How long do you have to wait for your harmony results? Tbh even with a high nuchal I would trust the harmony as much as a cvs, but obviously everyone assesses risk differently.
I too had the 10 week deal at the fmc and am also booked in for my 20 week scan there in a few weeks. Best £180 spent here too!

Aoifebelle Tue 21-May-13 13:55:58

Yes they managed to squeeze me in tomorrow as the prof will be there. I can have a CVS there and then if needs be. I can't afford it, but I keep credit cards for emergencies only and I reckon this qualifies.

I was really quite shocked by the midwife. I have had nothing but excellent care and compassion from the NHS, so to meet her kind when I was feeling so vulnerable was really difficult. She displayed not one ounce of compassion and just wanted me to make a decision there and then with bugger all information. I was also being really pressured as the consultants were due to be on holiday for the next two weeks, so was basically told either CVS this week, or I could potentially limit my options should a termination be necessary. So glad I managed to walk away and take some time to consider other options.

The results of the harmony are not due in until next week. Timing wise it is crap due to fly to portugal on Wednesday. Ordinarily I would just reschedule, but am bringing my niece and my parents have decided to tag along - they don't even know I am preggers.

Not sure what the best possible outcome is tomorrow. I suppose if the prof gives me enough reassurance I could then hold out for the harmony with no CVS. If the prof thinks things look dodgy, then CVS and a really grisly wait.

Money may not buy you happiness (or babies for that matter), but even a couple of hundred quid can buy you options. I feel very fortunate right now to have those options.

diege Tue 21-May-13 17:34:50

You will be in good hands tomorrow aoife. If a cvs is indicated the prof does them on a weds and you will get provisional results 48 hrs later. And it may well be the case that it's not an issue as they look at so much more alongside the NT measurement too. I would see be prepared for a wait though - weds very busy and my appointment was 2.5 later than scheduled as there was an emergency that morning.
Please update and let us know how you get on xx

Aoifebelle Tue 21-May-13 18:13:59

Thanks so much for that diege, that was really useful info. They have warned me to call in advance top check if there are any delays.I don't live to far away so not to much of a problem for me. I can't complain add they squeezed me in at such short notice. 48 hours is great was worried about the bank holiday screwing things up. I should know a whole lot more this time tomorrow.

Aoifebelle Sat 25-May-13 14:03:17

The harmony was redundant for me, scan at fmc showed risk of chromosomal abnormality of 1/2. Had cvs there and then, results confirmed. Dealing with fall out now.

The prof was interesting. If you want a gentle bedside manner and lots of reassurance, you are dealing with the wrong man. If you want to be told exactly how it is by someone who really knows his stuff and barely notice the cvs, then you are in the right hands.

The sonographer was either in complete awe of him, or terrified, or both. She was visibly shaking in his presence.
I work with many senior academics, and the prof had one of the most well developed `god like genius` complexes I have ever encountered, but I suppose his record backs this up, so fair enough. I am sure if he had better news for me I would be thinking the sun shines out of his arse.

Olive2012 Sat 25-May-13 19:01:50

Hi aoife, just read your thread and wanted to say my heart goes out to you, I'm really sorry to hear that and hope you make the right choice for you.

I've been lurking for a little while now reading this thread and went for my harmony test yesterday. Am now in the waiting period. Thanks to all you ladies who shared your knowledge and stories. I never would have heard about harmony otherwise. I've never been a big user of Internet forums but am a convert now!

diege Mon 27-May-13 13:47:53

Oh aoife I am so sorry to read your news sad I suppose it is some small consolation that you were able to find out relatively early but you must be in an awful place right now and my heart goes out to you.
Yes, I had read similar about the prof, and the receptionists spoke about him in very hushed tones when I was there. As you say though, fair play with his rep etc. Sounds like you got the info' you needed but under very sad and stressful circumstances. Saw your other thread and will be thinking abut you this week xxx
olive best of luck with the harmony - I too only heard about the test through this thread!

QueenofWhispers Tue 28-May-13 13:59:45

hi guys! will anyone tell me if they are willing to tell the results on the phone?

i was told that they would have my results today, so when I called they put me on hold and then told me that they will only discuss my results in person on thursday.

jmf294 Tue 28-May-13 14:38:47

Is that the FMC in London?
I am in the same position- due my results on Thursday but can't sleep as I want to know now. They took my date of birth and then said they don't have the result.
Left me thinking its bad news that they won't tell me.
To be honest they shouldn't give these kind if results over the phone as it would not be appropriate at all to be told something is wrong over the phone.
Good luck for Thursday- hope we both get good results, even though I currently am c

diege Tue 28-May-13 14:46:10

Hi,
I wasn't given the option of phoning and was told the results may well be back before my appointment but that I would get them when I came for the nuchal scan. The info' was actually given as I was walking with the sonographer to be scanned!
Not sure if it's relevant but the computers have been down all day today at the FMC as I have been trying to check the time of my next appointment. It may well be that they can't access them even if they are back!

QueenofWhispers Tue 28-May-13 14:52:16

jmf294

good luck to you! I know how you feel. I'm absolutely out of my mind with worry.

They told me they can't tell me over the phone, DH called and they told him they didn't actually have the results.

I wouldn't have worried as much if they had just told me they didn't have the results.

jmf294 Tue 28-May-13 15:05:43

I was awake for 2 hours in the night last night worrying and then when I got back to sleep I had nightmares about being at the clinic and them telling me bad results.
Crazy as there is nothing to do but wait but it's not nice!!

QueenofWhispers Tue 28-May-13 16:42:06

I know how you feel jmf I feel the same way. I had to watch tv to get me to stop thinking about baby and harmony results. I wish I could just walk in today and demand to know.

diege Tue 28-May-13 17:05:33

Fingers crossed for you both x
I too felt very nervous waiting for my results, though had a 'good' 10 week scan which put my mind at rest. The waiting at the centre was very long on the day I was there for my results (a weds) but I know you're seen quicker on other days. Distraction seemed to work best for me. I also have a history of terrible 20 week scans that have always raised 'questions' about possible chromosome issues (unfounded), so I tried to remember that the information I was getting would hopefully put other possible anxieties later on in the pregnancy into a better context.

Aoifebelle Tue 28-May-13 18:51:21

Hang in there jmf. I think they try to do the same for everyone to avoid people reading anything into the time to get results, or availability of results over the phone.

QueenofWhispers Tue 28-May-13 19:37:39

AHHHH how are we going to get through tomorrow?!

jmf294 Tue 28-May-13 19:54:38

Bless you Aoife- thanks for your wishes.
Keeping you in my thoughts during this most horrendous time for you.

Queen- no idea, got a trip to town and lunch out to look forward to. Retail therapy may be helpful I feel!!

QueenofWhispers Thu 30-May-13 21:29:08

Hi JMF

i hope you had good results today. i didn't have the best results, but I didn't have the worst. The harmony test came back negative for everything but the umbilical chord isn't doing so well. sad

JaneLondon2013 Fri 31-May-13 16:12:33

Dear all, it seems from what I read until now that the Harmony test’s result indicates either a similar risk or a lower risk than the combined test’s result. Among those who have done both the combined test and the Harmony test, is there anyone who got a higher risk result with the Harmony test than with the combined test? Is it possible? I cannot find this information in anything I read about the Harmony test. Thanks.

BryanBeattie Sun 02-Jun-13 08:19:06

The combined test has a detection rate of 90pc whereas Harmony is 99pc. The chance of a high risk result in a normal pregnancy is 4pc for combined compared to 1 in 1000 (0.1pc). Depending in how much free fetal DNA there is the risk often comes back at less than 1 in 10,000. Now it provides fetal sexing, identifies Turner Syndrome and works for twins.

BryanBeattie Sun 02-Jun-13 08:20:30

The Harmony test if negative usually gives a much lower risk than the combined test, typically 1 in 10,000

BryanBeattie Sun 02-Jun-13 08:21:08

The Harmony test if negative usually gives a much lower risk than the combined test, typically 1 in 10,000

Jillysmum Thu 06-Jun-13 16:52:36

Hi everyone. My name is Tina. I'm a mum to a 3 year old and also a news producer doing a story about the harmony test. If anyone who has had the test or is about to have it could message me today, I would love to hear from you. tlkraus@cbs.com. Many thanks, Tina

JaneLondon2013 Fri 07-Jun-13 09:59:13

many thanks BryanBettie

BryanBeattie Sun 09-Jun-13 08:34:56

Happy to chat tomorrow if any good. I have set up a directory for the network of centres who offer the test Nd recently hosted an educational meeting in Cardiff attended by the CEO if Ariosa Diagnostics who developed the test.
I am not sure if I can post the link but happy to do so if the moderators approve.
Bryan Beattie
Consultant in Fetal Medicine

PS Perhaps Mumsnet could host the Directory as an independent third party??

Samantha1981a Sun 09-Jun-13 18:07:52

I found out Friday from out NHS 12 week scan that I have a high risk of DS 1 in 25, with a nuchal fold measurement of 3.3mm, my blood hormones were high also, 3.88 where they should be around 1.
I have booked at a local private hospital for non-invasive pre natal blood tests tomorrow, is this the same as the Harmony test you speak of? The blood is then sent to a clinic n London to then be send to San Jose, I've been told I should have results by the following weekend, so about 12 days. I've felt awful all weekend, I don't know how I'm gonna get through the next two weeks sad
I've found the thread very useful! Thank you.

lotsofbananas Wed 19-Jun-13 14:58:09

Hi everyone, I have learned lot from what you have all posted.

I have been given a combined NHS scan result (neuchal and bloods) of 1/470, and I am 43.

We are trying to decide whether we should also pay for the Harmony test. Does anyone have any thoughts on this?

Bumpino Fri 28-Jun-13 18:03:31

Thanks to this thread I contacted the Fetal Medicine Centre where they did the Harmony Test together with the nuchal scan without any extra cost. This really helped me. I am 40, my NHS appointment for a scan was later than I'd expected and I just wanted to put my mind at rest, if possible, as I felt really nervous - not helped by previous history and (of course) medical professionals highlighting the "geriatric mother" risks. My blog has a bit more about the harmony test if anyone here is considering it: http://bumpino.wordpress.com/2013/06/28/the-harmony-test/

Lorakk Sun 30-Jun-13 23:24:29

Hijust wanted to let people know. If.you google Harmonybabycentre than you can find discussion about Harmony,maternity21,vetify tests on community.babycentre discussion Its US site but gives you lots of info about this test. They started to use it much earlier than here so more outcomes stories. Most of them have positive experience ,meaning the test showed low risk,negative and baby is heealthy. Also quite a few false positives followef by amnio with normal result on amnio. But also few false negatives ,not many but ... 3 babies had negative test but at the end the have been diagnosed with Downs syndrome. One of tjem from twin babies. Do not want to scare anyone but I think its better to know. Its very stressful time for me as I did harmony but not amnio. I have 2 months till edd and its scary

fluffyraggies Tue 09-Jul-13 13:24:19

Hi, i had the harmony test at the London FMC last Monday, on the 1st July, and i had a call today to say the test failed sad Not enough of babys DNA in my blood sample to give a result.

I was due to go back in for the results + nuchal can next Monday, but the receptionist said she could squeeze me in for the nuchal and a re-take of the Harmony tonight at 6pm! I'm 12 weeks today.

I'm high risk - 1:20 based on my age and the fact that my last baby had T21. (confirmed by amnio. no Harmony test for that one)

I'm gutted. And also paranoid that the result was in fact bad and they just want to get us back in asap sad

Have read the thread and i am grateful that ihave learned it's £500 for CVS. I may need to be ready for that later perhaps.

Stress.

Oldbambams33 Fri 12-Jul-13 19:33:54

Hi everyone. Just to add my story as I have found such comfort reading others stories on mumsnet. At 13 weeks I had my dating scan with everything looking fine. Bloods were taken for DS screening but to be honest I never thought anymore of it till I got a phone call 3 days later saying we were high risk, 1 in 60! To say I was devastated is to put it mildly.

Age: 33
NT: 1.3
Free Beta: 3.73
Papa A: 0.33

I was then offered a CVS or amnio at 15 weeks. I couldn't face the risk of miscarriage (even though v small) so I started to look into genetic testing. It was my screening midwife that suggested the TDL Clinic and the Harmony Test. After speaking with Dr. Lisa on the phone I decided to go for it. Dr. Lisa organised with my NHS screening midwife to send the kit up to Aberdeen and I had the bloods drawn up here then sent down to London. After 10 torturous days I got a call from my midwife saying the test had failed, that there wasn't enough foetal DNA. I then had a second blood draw and 14 days later we found out that we have very small odds of the baby have Trisomy 13,18 & 21 (ie Downs Syndrome) 1 in 10000. On top of that we now know we are having a little boy. We are over the moon!! The last 5 weeks have been the worst of my life but I would recommend the Harmony test to anyone out there that like me wanted a non invasive solution.

MrsJ78 Thu 18-Jul-13 11:39:01

Hi. I'm so thankful I've found this thread. With a test as new as the Harmony I think the more people that can add their info the better so I thought I should pitch in too.

I had a call on Tuesday from the NHS telling us that we were considered high risk at 1:120. My age isn't too awful at 35 and the scan seemed good. I had thought I was 12 weeks + 5 days but was told I was actually 13 weeks + 5 days. I'm still not sure if this can be right but who knows. Anyway, I was told that the nuchal fold measurement at 2.3mm for 13 weeks + 5 days was well within the normal range. The CRL was 7.7cm.

The problem comes from the blood test - HGC 1.8 (apparently too high)and PAPP-A 0.44 (apparently too low). I already have a daughter who is 3 years old and my results when pregnant with her, while considered low risk, weren't too stunning either - 1:550. Again my age (31 at the time) was ok, the scan was great but my HGC and PAPP-A levels were almost identical to what they are this time. I've spoken to a lot of people (two clinics that offer further testing, ARC and the midwife that had to deliver the high-risk news) and it seems 50/50 whether people think that almost identical blood results in two consecutive pregnancies are irrelevant (all pregnancies are different etc) or a possible indicator of this just being how my body/blood responds to pregnancy.

It's been an awful few days. I am now booked to go to the FMC in London early next week for the Harmony blood test and an early anomaly scan. By then I will be (according to the NHS dating scan at least) 14 weeks + 6 days so way too late for the NF etc. However, I'm hoping that I'll have some positive information following the scan next week and a nice low risk result a couple of weeks later!

I'm also trying to bear in mind that a friend of mine gave birth to a perfectly healthy little boy last month after receiving a risk factor of 1:54 and that my own previous pregnancy threw out the same the blood test results and my daughter is more than fine.

Good luck to everyone going through the same/similar things and I'll post back here when I've been.

fluffyraggies Sat 20-Jul-13 12:07:32

I agree, this thread is a great source of info. on real life experience.

Update for me - last posted on the 9th July, the same day London FMC had called me to say Harmony test had failed and would i come back that evening for the 12 week NT week scan, 6 days earlier than planned.

Went back - staff were wonderful. Very apologetic, even though it's no one's fault there wasn't enough DNA in my 1st sample. Gave 2nd blood sample then went in for NT 12 week scan. DH and i were terrified history would repeat it's self. Sonographer was aware of this and was amazing. She spent an hour scanning baby. I even had an internal scan. (not too bad) Most of this time was trying to get baby to take it's hands away from it's face so we could see the nasal bone! She didn't give up even though it was past closing time - 8pm! Saw the nasal bone in the end. Nuchal fold was only 1.3 mm, heart and stomach of baby all fine. My risk has gone down from 1:20 before scan, to 1:175 after looking at markers, and looking at my blood.

So relieved. Waiting now for the Harmony test results. Again! Today is 11 days later, so it must be v.soon. They have told me they do not give the sex of the baby, but quite honestly i don't care! i just want to hear that baby is OK.

Just for more info - as well as going to the FMC i have also been keeping my NHS appts. My 12 week scan with the NHS echoed what the FMC said. It was a dilemma for me what to do about this. But I found that with my last pregnancy (T21) the fact that i had gone private for the 12 week scan seemed to make me 'drop off the radar' as far as my midwife and the hospital were concerned somehow. I didn't want that to happen again.

Flofox73 Tue 23-Jul-13 12:31:38

Hi everyone,
It is so reassuring to see I'm not the only one worrying....I've just found out I'm pregnant with Baby number 4. I went to FMC for my last pregnancy 5 yrs ago and I found them really reassuring and clear and it gave me the confidence to enjoy my pregnancy. I just rang the FMC to book the 11-13 week scan for this baby and they told me about the Harmony Testing which I'd never heard of before. As I'm 40 yrs old now I am much much more worried about something going wrong this time.

I just wanted anyone who reads this to know that the Harmony info isn't on the FMC website and so I've just quizzed the lady there who answered the phone when I tried to book an 11-13 week scan. Basically she said that if you are between 10 weeks and 10 weeks and 6 days before end of August this year then the Harmony test is free and so you pay only for the 11-13 week scan which is £180. From September onwards the Harmony test plus 11-13 week scan is going to cost £400. So if you've just found out your pregnant maybe think about booking it sooner rather than later.

I'm not sure why they are so focused on the specific gestation period, so I'm going to read back through the hundreds of posts here.

We've now decided to come back into London (ironically I only live about 20 minutes from the FMC) from a camping holiday to take the Harmony test at 10 weeks to the day just before the end of August.

Please believe me that I found the FMC worth every penny in my last pregnancy for the reassurance and level of detail and information.

Good luck everyone xxxxxx

clairedunphy Wed 24-Jul-13 09:25:24

Hi everyone,

Another real life update here. I haven't posted on this thread before but read it all through and wouldn't have known about Harmony without Mumsnet so a huge thank you for everyone else's experiences.

I'm 10 + 6 with DC2, IVF pregnancy on our 3rd attempt and I'm now 41 so we were much more concerned than last time, when we were blissfully naive about all the risks! So having read all the info I booked into FMC for the £180 deal and we took the train down yesterday.

They were great, we were a bit late which they were lovely about, and the scan was really reassuring as she spent ages checking as much as she could for this stage of pregnancy. But, unfortunately for us, they weren't able to continue with the Harmony test because she found what was possibly a second sac.

She couldn't be 100% sure, it may just be a small blood clot, but it's possible it's a sac left over from a "vanishing twin" (lovely phrase!). We had 2 embryos transferred with our treatment, so there's a chance that one didn't make it but has left some chromosomal material in this sac. So my blood sample may show abnormal chromosomes which are related to that sac and give a false positive. Because of the risk of this the doctor was unwilling to do the Harmony test.

We're quite disappointed but really appreciated her honesty. We agreed to go back in 2 weeks for the 12 week scan and bloods anyway, as that will give a better indicator than the NHS scan (which doesn't check for all the same things). However, we've now decided that it's not worth the day off work for us both and trip to London so we're going to a local private clinic for the 12 week scan instead.

And a big thumbs up to FMC, I've just phoned them to cancel our next appointment and asked how much we owe them for yesterday, and they said we don't have to pay anything! So that's a bonus, we effectively got a really reassuring 10 week scan for free (always looking on the bright side!).

So whilst my experience hasn't quite worked out, I wouldn't hesitate to recommend FMC, they obviously have the interests of their patients absolutely at the forefront of what they're doing.

On another note, we pre-booked our train tickets for the 12 week scan and now can't get a refund. I'll start a new thread but if anyone can use 2 returns from Birmingham International to London Euston on 6th August then let me know!

MrsJ78 Thu 25-Jul-13 09:43:58

So, we've been to the FMC, the blood test has been done and now the wait begins. As I am 15 weeks pregnant we had to pay for £400 for the test but it is worth every penny as far as I am concerned. The early foetal anomaly scan was incredible. Very, very detailed and a reassuring 'normal' given for every single marker that they would be looking for. I'm glad we had the scan as it has given us a really positive boost which will hopefully sustain us during the wait for the results.

henryscat01 Thu 25-Jul-13 12:34:16

Hi everyone - a friend told me about this test last night, as a 40 year old with first pregnancy, I am seriously considering taking this test.

Looking on the internet, it appears there are other places than FMC that do the testing. Is the FMC the best one to use? Thanks

MrsJ78 Thu 25-Jul-13 15:00:15

Hi Henryscat01,

I think there are a few other places that offer the test. If you phone ARC 0207 713 7486 they can probably give you details of the nearest place to where you live. It would actually have been quicker for us to go to Cardiff. However, they charge either £700 (or £750 - I can't remember) just for the Harmony blood test. At the FMC we got the Harmony blood test AND an early anomaly scan for £550. Plus they appear to be leaders in terms of research and development so they get my vote! Other people have said they have had a good deal at around £180 but I think it depends on your dates so it might be worth calling them. Best of luck!

babyjack2 Fri 26-Jul-13 16:31:21

Hi, Just wanted to add my experience of Harmony, I am 43 and pregnant with my 2nd baby first one at 40 and had the good fortune to go to Kings with him, however this time round even though higher risk (I've had problems since giving birth) my PCT don't send you to Kings anymore so looked for a Private Clinic - I went to The Avenue Clinic in Sevenoaks for an early scan and they told me about Harmony Mr Abbas FMC used to be at Kings with the Professor and also has an office in Harley Street very lovely man. Had my scan at exactly 12 weeks which was very positive and now have my results which were 1:10,000 and I was given the option to know the sex.

It' s expensive like most of the other places £650 including the scan but as I have a stepchild with Downs already we needed the peace of mind the NHS just can't offer you! His assistant said that the NHS are trialing it at 4 London hospitals (including Kings) but I think you have to be a High Risk result on the Nuchal to get it, but researching this test before agreeing and reading this thread I hope they do take it on - surely if the NHS take it on they could open a centre in the UK and dramatically cut the cost most of it is the specialist courier to the US!

Does anyone know if there is a petition or campaign to get Harmony on the NHS? There are so many people out there that can't afford to go private or don't even know they have an option!

fluffyraggies Sat 27-Jul-13 08:43:22

OK - update.

After waiting 17 days for the results i got a call yesterday ..... 2nd attempt at Harmony failed again! sad

Can't have a third test unless i want to pay again - and was advised by them not to bother (in a nice way) anyway because with 2 failed attempts behind me the likely hood is that it would just fail again. Humph. I guess i am one of those unlucky ones for whom it wouldn't/wont work.

I want to say, though, that despite the £180, plus the petrol, parking + congestion charges for 2 drives into central London (plus the time off work for DH) neither of us regrets going to the FMC for a moment. The treatment we received there was faultless. The 12 week scan they gave me was worth every penny of the £180. As i said in my last update she was scanning me for over an hour and past closing time!

I feel reassured by their words - more so than if i had just had the NHS scan. (Which was performed by a lovely lady, but only lasted 5 mins) and must settle down now and wait for my NHS 20 week scan.

Henry - for info. - the clinics local to me (within 30 miles) were all charging between £700 and £900 for the Harmony test!!!

rosalux Sat 27-Jul-13 14:46:26

Just to say, I have booked in for the HT in Cardiff in a week (when I will be 16 weeks) following a combined Test Result of 1:959. At 34 I know this is not particularly high compared to other people's results, but I am very anxious about pregnancy anyway. DH does not want me to have any invasive testing because of the risk of mc and we spoke to the fetal medicine consultant specialist at the hospital yesterday (which is the fetal medicine specialist centre for South West England) who confirmed that whilst the risk is smaller than the 1:100 quoted, they do always have at least one loss every year sad The consultant was very very positive about the HT though and said he expected it to be available on the NHS within a few years. He also said all the bloods are sent, via London, to California, which is the only place that does the testing at the moment, and that the lab there charges £500. Hence the high cost. It's £750 in Cardiff, including scan and amnio if the result comes back positive. The lady I spoke to said they basically don't make any more money from the test than a combined test (which is about £200 I think), which having spoken to the consultant I can believe.

Hope all goes well for everyone.

NB: my combined results at 12+6 were -
NT: 1.5mm
BHgc: 2.834
PAPP-A: 0.874

Think its the BHgc driving the risk up, but the consultant couldn't explain why it changes from pregnancy to pregnancy, save that it comes from the placenta not the mother

onceipopicantstop Sun 28-Jul-13 08:23:16

Hi all am finding this thread really helpful but haven't had time to read it all yet - so apologies if I'm repeating a question! I'm 39 and nearly 8 weeks with dc2. We had a nuchal scan last time which came back very low risk and went on to have a healthy baby. Feel much more anxious about ds this time due to my age. Have now heard about Harmony and wondering if we should go with this instead. Just a couple of queries:
1. Local clinic is Cardiff - they are charging £750 but this includes an amnio should it become necessary. Is this about right? Fmc seems cheaper but not sure if amnio included in price? (Obviously can call them but thought someone might know)
2. Is this still an experimental test? How many have been done etc etc
3. I've read somewhere that you can get false results from the dna of a previous pregnancy still being in your blood - has anyone else been told this?

Sorry for all the questions and thanks smile

fluffyraggies Sun 28-Jul-13 09:08:52

onceipop - at the FMC the original plan for me was that my Harmony test results would be back a day or two before going in for my 12 week scan. (They said they would never have a woman turn up for her scan and be faced with bad news there and then from a bad result), the idea, as i understood it, was that if the Harmony test results were indeed not good, then you could have a CVS instead.

The thing is if you go in early (up to 11 weeks) at the mo the £180 is for the scan/CVS and the Harmony is thrown in free. As someone has said this deal ends in September this year.

But i would ring them if i were you and have a chat. The receptionist (and it always seems to be the same one, it's a surprisingly small set up for such a famous clinic) is very clued up and very easy to talk to.

onceipopicantstop Sun 28-Jul-13 20:44:47

Thanks for the reply. We've had a look at dates this evening. I'm pretty sure we're going to go ahead with the harmony test and am keen to do it as soon as possible. But because of hols and dh's travel with work it's not really going to be feasible to get to London. So will have another chat with the Cardiff clinic and try and get booked in.

Xuxidog Wed 31-Jul-13 10:55:00

Hello there!

I am a frequent reader of mumsnet since becoming pregnant, but have registered specifically because of this thread, which has been so helpful and informative.

I am 36 years old and 14w4days pregnant with my first pregnancy. Its fair to say that I have been pretty anxious all the way through so far, after a couple of initial little bleeds.

I live in Mallorca, and our health insurance covers maternal care, so I have been very lucky to have seen my private OBGYN many times so far, and have had several scans.

He performed the NT scan at 12w6d (though I was measuring 13w6d) and all was normal - NT measurement of 1.89. Then he took blood and I cot the results back on Monday - 1:240 risk of downs (so higher than the 1:270 average for my age) and over 4 x normal HCG level. PAPP A was 1.3 something so within the norm.

He said that he would not do an amnio for another couple of weeks until the baby is bigger (8.6cm yesterday - back within my dates) but told me about the Harmony test which I went in for yesterday (he also did another quick scan as my request as I always find it reassuring to hear the heartbeat (148bpm) and know that the baby is alive and well). The test is not covered by our health plan, and we had to pay €750, but I decided it was worth it on the basis that a) I could be doing SOMETHING during the 2 weeks I would have to wait for an amnio and b) that I hopefully won't have to have an invasive and risky procedure if the Harmony results are good.

So - apparently, I am the first person that they have done the test for, and they don't know how long the results will take (they go to Barcelona I think), and he has now gone on holiday until 12th August (maybe thats why he would wait on the amnio??), so I will have to wait at least until then.

I told everyone I was pregnant at 12 weeks, as as anxious as I am, it more about m/c and I really didn't expect this....I don't do well with waiting and this next couple of weeks are going to feel like an eternity, and this thread will be a real life line.

fluffyraggies Fri 02-Aug-13 15:00:19

Hi xuxidog - sorry to hear you are having to play a waiting game. It's very hard isn't?

My advice to you would copy and paste your post and start a little thread of your own in Antenatal Test and Choices here on MN. You will probably get more general traffic and chat/support, as this thread tends to be quite quiet with just info. updates from time to time.

I wish you the very best, and that your results come back soon and are clear smile x

Xuxidog Sat 03-Aug-13 09:01:36

Thanks fluffyraggies, I have gone ahead and done that.

I have read your story, and I am sorry that the test didn't work for you as it seems that knowing the results would benefit you a lot based on your previous experience.

Will you be doing an amnio? x

MrsJ78 Mon 05-Aug-13 20:18:48

I've copied this from another thread just in case anyone is using this thread to see how other people's results turned out:

It's good news!! I called at 4.30pm to see if the results had come in and they had. I could tell they were in as they checked all of my details twice (first name, surname, date of birth etc) and then put me on hold while they transferred my call. I had so much adrenaline pumping that my hands were shaking. Anyway, the news is great - low risk so the usual 1:10,000 etc. Results were emailed to me moments later. We are over the moon. I think it is going to take a while for it to really sink in.

I can't say enough good things about the FMC - really amazing. I would love to be able to go back for my 20 week scan but I doubt that will be possible. I am so glad I had the Harmony test and feel so grateful that it was available this time around (it wasn't for my previous pregnancy). Due to my slightly later stage of pregnancy (15 weeks at the time of testing) I had to pay the £400 fee but I can honestly say it is the best money I have ever spent.

Stevie77 Thu 08-Aug-13 11:38:25

Hello, read most of this thread with interest as I'm in two minds about this test (and slightly more confused now).

With my first, we paid for a private Nuchal + bloods and abnormality scan later on and was quite happy with that. This time I am more worried, first because I am older (36) and second because I already have a child whose future I have to think about.

Anyway, a friend did the Harmony test in London (where she lives) and that gave her some piece of mind, but I just think about the huge cost. We can afford it, but it's still a hell of a lot of money. The cheapest in the NW I found was £695. I read about the FMC offer but it could end up nearly the same cost with accumulating train fares if it'll need to be repeated etc.

Also, I've a slightly added complication this time as we're out of the country when I should be 11+6 until 13+3, so at the crucial time for the NT. Just can't seem to decide if to do the NT first and based on the results do the Harmony or do the Harmony anyway :-/

Confused.com

ldza Thu 08-Aug-13 17:23:58

Hi

I am 17 weeks pregnant is it still point to do harmony test, can I still do harmony test after 17th week,or it doesn't make any sense because is too late, I have test tomorrow...sad

henryscat01 Fri 09-Aug-13 09:01:57

Hi everyone

I've had the first part of the Harmony test yesterday. Have to say the service was very impersonal, it felt almost like being on a conveyor belt of people going through the place.

Don't get me wrong I want to have the test, so this outweighs it. I've never meet a nurse doing blood tests who was so un people friendly! She huffed and puffed as she couldn't get enough blood out of my first arm, so had to do the other one as well. And was not at all chatty.

Have to say the scan was hardly worth it as well, I have a fibroid which was blocking the view (I've had internal ones up to now), so the images were not very clear and certainly not good enough to get a print out.

Also to point out which wasn't clear to me before going, you get a result of either high risk (1:10000) or low risk....anything low risk they offer CVS free.

I thought for example 1:500 would be ok for my age, so was a bit shocked by this information.

I have two weeks now to wait for the result and in the between time will have my NHS scan.

MrsJ78 Fri 09-Aug-13 20:35:53

Hi Stevie77. It is a tricky choice. I decided to go for the Harmony test as I got the dreaded call to say we had a high risk result after the 12 week NHS scan. I don't think I would have bothered had I not been high risk. In my first pregnancy I had a low risk result but it was still 1:550 which worried me for my entire pregnancy and I went through a lot of anxiety for nothing. I was thrilled this time that there was an option to not go through that again. However, if the results had come back a low risk of, say, 1:1000 or better then I would have been reassured enough by that but I think it really depends on how you feel about it yourself. My friend got a high risk result of 1:54 and thought that was fine and didn't worry at all! (Her baby has since been born and is fine). Hope it all goes well whatever you decide.

Idza - I had mine done at 15 weeks. I don't think there is a point where it is too late for the test to be done.

Henryscat01: Sounds like an awful experience - where did you go? Re. the Harmony, I was told that the high risk/low risk thing is viewed differently than the combined age/scan/blood test. Something to do with the Harmony test being so much more accurate that they can either say low risk at 1:10,000 or it is something v high like 1:2 with nothing in between (I hope I'm remembering this right). For example my NHS combined test put me at 1:120 risk but the Harmony put me in the low risk / 1:10,000 category. Hope this makes sense!

henryscat01 Mon 12-Aug-13 09:32:58

Hi MrsJ78 - I had mine done at the FMC like most people on this thread, I just found it very impersonal and was quite surprised after reading all of the very positive reviews of the place on this forum.

Thanks for the further information re their ratings, they didn't explain that very clearly at the consultation.

Englishroses Mon 12-Aug-13 22:55:00

I'm booked in for the harmony next week. Feeling a bit apprehensive with the last few reviews of the service at the FMC.

CrispyFB Wed 14-Aug-13 13:36:55

When I went nearly three years ago for DS (no Harmony then) they gave me a 1 in 34. But they were brilliant, and I didn't feel it was impersonal at all. They answered all my questions, no matter how bizarre or technical. I even got to meet the professor who was every bit as eccentric as I'd been promised.. encouraging me to throw tissues across the room and hit the bins and so on! But very reassuring when it came to important matters too. He said he was sure my baby did not have T21 from the scan despite the high odds but obviously only an amnio would tell us for sure.

I chose to wait it out as even in the hands of the FMC, I knew I couldn't live with myself if anything happened and we wouldn't terminate for T21. Longest wait of my life, but as the professor thought, he has typical chromosomes. I actually got a "late" amnio done at 32 weeks which gives the same risk of preterm labour as of a loss earlier on, so it is pretty much safe at that stage. I didn't want delivery day overshadowed by studying DS's eyes, palms etc.

I was so pleased with the service I went back for the anatomy scan as well - far more in depth than the NHS one.

I posted a lot about my experiences at the time on this board, but under a different name! Had to namechange after MIL found out my name on here.. it began with "spark" in case anyone is wondering, and ended in "lies" wink

Nearly 8 weeks again now, and I am so, so, so relieved Harmony is available this time round after the stress of the last pregnancy. I would not wish that wait on my worst enemy. I'm scraping in with literally a day to spare for the special offer and will be down there in a few weeks. Hurray for maca powder causing me to ovulate a few days earlier than normal this cycle, saved us £400 grin

Hopefully the service will be as good as last time, I guess I'll find out soon!

henryscat01 Thu 15-Aug-13 09:10:31

Maybe my viewpoint of the service was taunted by the excellent and very personal service I have received at my IVF clinic, where the staff were all warm and friendly and it felt as if they were personally involved in your journey.

The FMC did not feel like that to me at all.

I have has 3 different doctors there and they have all been fantastic.

Last appointment was for 20 week scan and the lovely doctor was not going to let us go until she had counted everything she possibly could. Little one would not open one hand so was asked to go to the loo a couple of times, prodded a lot and eventually hand opened and all 5 fingers were there.

Receptionists weren't the most chatty but the doctors deffo made up for it.

Lolle66 Fri 16-Aug-13 10:12:56

Hi,
I just heard from a friend, that she had another non-invasive test done called NIFTY, which is the exact same as the Harmony test. She had it done at a clinic called This is my and she was very satisfied with it. I was wondering if others have experience with the NIFTY test, since I am in week 11 and am considering the test. I actually think that this test was a little bit cheaper than the Harmony.

onceipopicantstop Sat 17-Aug-13 17:19:59

Hi I've been to the fmc this week for the Harmony test and was very happy with the service. Scan was as detailed as it could be at only 11 weeks, and the doctor was very happy to answer our questions. Now on the two week wait...

CrispyFB Tue 20-Aug-13 11:37:10

Just curious - obviously the trisomy result is the important one, but does the FMC tell you the sex as well from that? I haven't been able to find out definitively one way or the other - obviously Harmony supports it and some clinics provide it, but whether FMC requests that information too is another matter.

MrsJ78 Tue 20-Aug-13 13:54:39

onceipopicantstop - good luck with your result!

CrispyFB - no, the FMC told me they wouldn't confirm gender based on the blood test. However, they were quite happy to tell us we were having a boy based on our scan at 14/15 weeks!

OctonautsFan Tue 20-Aug-13 14:00:39

Hi

Just to say that I had the harmony test at 14 weeks at the FMC too, about 2 months ago. Sorry, this is my first ever MN post and I have been meaning to register for a while to say thank you to everyone on this post as it was the only way I found out about the test! When I did a general google search this thread was the only useful thing that came up and it was a massive help.

The test (plus scan looking for "soft markers") cost £500 but they did say it would have been free if I had gone at 11 weeks. But as I only went there following a 1:65 chance from the NHS following my 12 week scan then I wouldn't have thought about it beforehand anyway. The doctor I saw was fantastic, did a full scan and explained in detail how the test worked, and was clearly passionate about the research. I did suggest they advertise the test better and change their website so the harmony test is more prominent and its purpose clearer!

Luckily we got back the 10,000:1 result which was a huge relief.

The midwives I saw after the test (Lewisham Hospital) had all heard of the test and were all fans! They say they are just waiting for some enterprising (rich) person to set up a lab in the UK so the bloods don't have to be flown to LA and then maybe one day it will be on the NHS..

Anyway, despite the cost I would strongly recommend the FMC and the test - it will give you the most definite result possible without an invasive test.

henryscat01 - the nurse was a bit huffy with me too and also said she couldnt get enough blood. Maybe it was her technique rather than our blood vessels smile

CrispyFB - from what they told me I don't think they test for sex within the harmony test, it scans for downs, edwards and patau syndrome.

The very best of luck to you all waiting for your results. x

CrispyFB Tue 20-Aug-13 14:37:45

Thanks both of you!

Harmony does have the ability to test for the sex, it's just whether the requesting clinic asks for it or not. For all I know it may cost extra, so given I'm getting Harmony for "free" with my NT scan (just scraped in under 11 weeks at the end of this month!) I am not going to be ungrateful. I was just curious if they did!

When I went to the FMC with my last pregnancy for similar reasons to you OctonautsFan (1 in 65 on the NHS too!) for a better NT screen, they told me the sex correctly and it was just before 13 weeks. She gave it based on nub theory and even explained it to me (although I already knew!) but I was so pleased to finally have somebody doing a scan who not only knew about it, but really knew about it. I googled the sonographer's name afterwards and it turned out she'd written several books on first trimester ultrasound and quite a few research papers. Love the calibre of staff in that place!

OctonautsFan Tue 20-Aug-13 20:57:15

That's amazing, it can probably test against all the chromosome pairs. Feel very lucky to live with 21st century medicine! Best wishes for your test.

CrispyFB Tue 20-Aug-13 22:06:07

I agree. I wish so much it had been around even three years ago as it would have saved 20 weeks of anguish and stress! On the plus side I learned an awful lot about this sort of thing, and also Down Syndrome. I wouldn't wish the long wait on anyone however, and I'm so grateful I can skip it, no matter what the NT screen result, this time round.

Thank you!!

Thanks to finding out about this test on this thread, I am going on Friday for initial scan + blood sample. Will be 10 + 4, mostly worried at this point that there will be no heartbeat. Did you mostly go to the clinic on your own? I am worried about how I will cope if there is bad news.

5amisnotmorning Thu 22-Aug-13 17:27:03

Crispy - we were hand holding together last time - I was bubandbump. Well am 12 weeks pregnant and had another high nuchal, immediate referral for diagnostic but will be booking the harmony test tomorrow morning as would never have the cvs again. Can't believe that we have to go through this again though.

MapleLeafy Thu 22-Aug-13 19:37:55

Hi Everyone,

Thanks for all your great posts on this subject! I'm 37 years old, in my 13th week of pregnancy and partway through traditional screening (I've had my NT and first blood test, but not the second blood test yet) but I've just learned about the Harmony test and am wondering if I should do it. I live in Canada, not the UK, but the situation is similar in that the cost is very high (roughly 600 pounds). My NT showed a low risk (1:1560; the result was 1.7 mm and the nasal bone was present) but I know that the NT is only 80% accurate. Am I being paranoid?! Once I have the second blood test results (in about 2 to 2.5 week), the results will be 90% accurate. My OB said it was entirely up to me whether to do Harmony or not but the physician who gave me my NT results (different physician) said that I should only do it if I had lots of money to waste (!).

It was difficult for us to get pregnant (IVF) and I really want to be sure that everything goes well, so I could just spend the money (it's quite a large sum, though!) but I have also read that Harmony has not been tested in women with low-risk pregnancies. Various medical groups, like the ACOG, only recommends it in high-risk pregnancies. My age would make me high-risk but my initial results make me low-risk... Any thoughts?

CrispyFB Fri 23-Aug-13 11:45:42

5am - Wow, we meet again!! I remember your story, and the amazing outcome.. after all usually 1 in 2 is nearly always bad news. I'm so sorry you have to go through all this again but thank goodness for Harmony. I replied over on your other thread.. I am hoping very much that you just naturally have high nuchals. I think with mine in the end I assumed that the high bHCG I have naturally even early on probably contributed to my screen positive.. (the FMC said it was quite likely) - perhaps sometimes people are biologically going to screen positive even though their risk is no different to anyone else's.

CrispyFB Fri 23-Aug-13 11:49:54

FraterculaArctica - I've always been to the clinic on my own, not through choice, but childcare issues usually. There are lots of women there with their partners (it is hard not to feel jealous!) Just realised your appointment is today - I hope very much all is well! Mine is next Friday.

MapleLeafy - I'd imagine the results would come out the same whether you were high risk or low risk.. perhaps the research suggests there is only really a (financial) benefit to doing it in high risk pregnancies as low risk ones, the odds make it not worth it? I think it would otherwise work the same after all - the Harmony test does not know if you screened positive with the NT screening.

I'd recommend you wait until your blood test results. For instance, the NT fold with DS was perfect, but my blood test results were absolutely dreadful which is why I had a 1 in 34.

Crispy - thank you for asking! My DP did come in the end and we were relieved to find all looks fine at this stage, saw a 10 + 1 fetus (3 days 'younger' than by LMP) with heartbeat! I am sure I will start worrying again in 2 weeks' time before the Harmony results but it was so good to see that! Hope all goes well with your scan next week.

A question for anyone who's got to that stage - did you have the NHS nuchal scan as well? Mine is scheduled for the day after my 12-week FMC scan, it seems a bit pointless to do both. I asked the doctor today about this, she said it was better not to have the NHS scan as it could give 'different results' and worry you - but is it better to go through the NHS 'process' anyway so they can record things?

CrispyFB Sun 25-Aug-13 13:03:55

So glad that all looked good! I'm looking forward to seeing baby again because I haven't seen it since 7+1.. although I have been listening on the doppler every day since 8 weeks and it is getting clearer and easy to find so I assume all is going well! I'll be 10+1 on Friday when I go.

I'm wondering what to do about my NHS NT scan too. If it is ever scheduled hmm - I saw my doctor as they requested at 6-7 weeks and they referred me but I've had zero contact with any midwives, consultants, scanning places.. nothing. At this late stage it is now unlikely I will be able to sort childcare out in time as they won't be able to give me much notice, so I may just go with the FMC one, but like you I'm worried about it messing up the NHS system.

bobcat40 Wed 28-Aug-13 11:14:26

Hello Ladies,

I have been following this wonderfully informative thread and thought i would add my experience into the mix. I attended the Birth Company which i think shares the same building as the FMC on Harley Street to have my Harmony Test, following my NHS NT scan and blood tests. It cost me £600 (plus train fare etc), and I was very happy with the level of service. I got my NHS combined scan results back as low risk after i'd had the Harmony Test, but we had decided we wanted to do this additional test just for peace of mind.

On the day, before the blood test, the very lovely sonographer did a detailed scan (I was about 13 weeks at the time) and I heard the heartbeat. The Birth Company also send you an iScan Baby link after where you can view you scan pictures and hear the heartbeat. I got my results back 10 days after the test (a consultant rang me from the clinic) and am relieved to say they were the low risk result of 1:10,000.

I also wanted to let you know that with the Birth Company, as part of the Harmony Test you can also choose to have them test in America for the gender of the baby (no extra cost and is 99.9% accurate!). We said yes to this so I found out what i'm having when i got the Harmony results! I'll be interested to see if my NHS 20 week scan confirms this.

Wishing you all happy and healthy pregnancies Xx

henryscat01 Wed 28-Aug-13 12:54:34

Hi Ladies

I got my results yesterday from the FMC and have to say the experience was so much nicer than my first time there.

The scan was amazing last about 20 minutes with the sonographer explaining what she was looking at all the time. And thankfully for me, the risk came back at 1:10000.

One thing which was interesting was that the sonographer simulated the NHS risk factor which was pretty much spot on with what the NHS told me at 1:1400.

Money well spent I think! And the best part, having a DVD to take home of the whole scan ;-)

CrispyFB Wed 28-Aug-13 19:17:16

Great news for both of you! I'm glad you had a better experience henryscat01 - sounds like your first one may just have been bad luck.

I had an NHS NT scan last time which put me at 1 in 65 (or was it 1 in 60, can't remember now!) but the FMC put me at 1 in 34. They were a week apart so presumably some things had fluctuated. However I came away more relieved from the FMC scan because she went into such detail with the scan and said she could honestly see nothing troublesome at all (with the obvious caveats over it being early still) - I think she probably checked for everything she could at that gestation though!

At my anomaly scan with them at 18 weeks (again, massively more in depth than the NHS one) I had the professor come in and he looked at DS and at the findings and turned to me and said "Your baby does not have Down Syndrome, I am certain" or words to that effect.. now that's confidence, and he was right. He was far more interested in my recently-placed abdominal cerclage!

And yes, the DVD is excellent! Very happy with that.

That's very interesting the other company there does the sex of the baby. Assuming all is okay with baby, I like the idea of getting the sex that way as I could get them to write it on a bit of paper so I could share the moment with DH (who can never make any scans) later.

Two more days until I go in for the first part and the bloodwork. I can hear baby on the doppler much clearer than a week or so ago, so hopefully no unpleasant surprises, but I am still nervous just in case! People always seem to drop like flies around NT scan time on due date groups when they get scanned and it's all gone wrong. I'm due at the back of my month (March) so I'm seeing all the bad news before I go! This two week wait is going to be hard.. but nothing compared to my 20 week wait last time when I waited it out. Come on 1 in 10,000..

MrsDibble Wed 28-Aug-13 20:54:14

I went for a Harmony test at FMC last week and had a really good experience.

My NHS NT scan had come back with a risk of 1:107 for Downs because of absent nasal bone and low Papp-a results. I don't like the idea of an amnio of CVS because of the risk involved so I decided to go for the Harmony.

I was about 12+1 when I went for the NHS scan. When I went for the Harmony test at FMC I was 13+0 (they actually told me I was 12+6 but it was six days after my NHS scan so they are in disagreement about the dates!). By this time the nasal bone had ossified and they could see it on the scan. This gave me a risk of 1:5700 ish - much better! I don't know why the NHS don't just recommend another scan in a week's time if the nasal bone makes such a difference... Papp-a was still a bit low but apparently that is much less significant on its own.

Anyway I decided to have the Harmony test anyway, and am waiting for the results. I didn't know you could find out the sex through this test so didn't ask - but I'll see if they can tell me when I get the results.

I didn't get a DVD from the scan though (boo) but maybe that would have been an extra cost. The scanning was very good. My baby was facing the wrong way the whole time so the doctor spent ages trying to get a good view. She was really thorough and patient and I felt confident she would keep trying til she'd seen everything she needed to. Funnily enough the thing that worked in getting the baby to turn round was to go and drink a hot chocolate - don't know why that would work when jumping up and down didn't!

Fleegle67 Thu 29-Aug-13 15:24:17

Hi there,

Not sure if anyone else has been, but I had the harmony tests done at the Edinburgh Clinic last week. The cost was £750 which included the scan, the harmony bloods and diagnosis of the sex of the baby. Despite a fab scan at 12 wks on the NHS (clear nasal bone and low NT of 1.3mm) I came back high risk (1:144) primarily down to my bloods (low Papp and high Hcg) Coupled with the fact that I am 40, I probably should have seen it coming.

Thankfully found out about Harmony from a friend and we didn't hesitate to book it. Now sitting in the agonising "wait" zone for our results. I'm hoping and praying we get them today or tomorrow as I don't think I can cope with another weekend of waiting.

CrispyFB Fri 30-Aug-13 17:29:25

I had the first part of my Harmony test at the FMC today. As before, a very good experience! Baby is somehow already measuring 4 days ahead (I charted and got a BFP at 8dpo so I know my dates are right!) so yet another high percentile baby like my first two.. no surprises there.

She took my blood for both Harmony and the NT screening which surprised me as I thought they took the blood for the NT screening at the same time as the NT scan and nuchal measurement.

Anyway, I asked about sex and Harmony(!) and they said for an extra £10 they would request it, and stuck extra stickers on and ticked extra boxes! I'm surprised they never offered that to anyone else? Maybe it's a really new thing. Anyway, so long as the results are valid, I should know all of the results in two weeks when I go back for the NT screen. They said if they aren't valid they make one more attempt for free.

It feels a lot easier waiting for results this time without the weight of an NT screen positive over me.. I'll still get the NT odds of course, but Harmony will pretty much supercede them.

I literally scraped in on the last day. Given we had been trying for 13 cycles for this baby, that was incredibly lucky.. saved £400!

Hope everyone else gets great results grin

onceipopicantstop Mon 02-Sep-13 07:32:19

Hi just to say we had our results from the fmc a few days ago and it was good news! NT risk of 1/2000 and Harmony less than 1/10000. Plus a very detailed scan which was all normal. She was pretty sure from the scan that it was a boy!! So am feeling very reassured smile.

Our local private clinic were charging £750 for the harmony only, whereas we paid £180 and had NT, Harmony and two detailed scans!! Well worth it even with the extra travel costs.

CrispyFB Mon 02-Sep-13 12:14:06

Hurray, congratulations on the sense of relief!!

The NT scans there are amazing compared to the NHS ones.. I felt so spoilt by the one I had with DS last time I would have gone there Harmony or not for this one!

I get the second part a week on Friday smile

MrsDibble Mon 02-Sep-13 14:19:21

Hi. Just to say we got the harmony test results back and had good news too. Risk of less than 1 in 10,000. Very pleased. They said I could find out sex once I asked, if I paid £10 after which they would phone lab in America. Probably would have gone for it if they'd offered it in the first place but not sure I can be bothered now - will find out at 20 weeks anyway.

CrispyFB Mon 02-Sep-13 18:22:39

That's great news! What a lovely relief.

Interesting that they can find it out even if they didn't report it initially.. I guess they must check for it regardless as I can't imagine for just a tenner they'd retest the whole lot. Plus surely they must discard the blood after testing too!

MrsDibble Tue 03-Sep-13 12:16:36

yes, I think they must check for it but not tell you unless you ask!

CrispyFB Tue 03-Sep-13 21:41:53

Just out of interest, how do they give you the information when you return for the NT scan? Do you find out the Harmony results first, or do they do the scan and then tell you? Do they tell you verbally, or by showing you a printout and talking it through with you?

Just curious because (assuming all is well with the results.. trying very hard not to think about that!) given they are hopefully going to give me the sex too, it would be nice if I could somehow keep that hidden so I could share "the moment" with DH later at home as he can't make it! But if they wave it under my nose I can hardly not see..

onceipopicantstop Wed 04-Sep-13 07:53:52

Hi she told me everything was ok so far as we walked in the room, but then did the scan and nuchal fold measurement before discussing the results in detail. I think that was in case any abnormalities were seen on the scan. Then she calculated my nt risk on the computer which already had the blood tests entered I think. Then confirmed harmony was also low risk. We were shown a letter with the results but I'm sure you could ask not to see it - if the sex is on the same sheet.

We were given a typed letter with the results to take home so I would think you could ask to have the nt and harmony results during the appointment, and have the baby's sex written in the letter?

CrispyFB Wed 04-Sep-13 14:47:33

Thank you very much, that was exactly what I was after! I was hoping it would be something like that - from past experience you only get the letters/printouts at reception when you leave having already been verbally informed of any results, so there's no actual need to look at it then and there.

I am so glad they give you some reassurance before the scan (presumably based on the Harmony results!) I would be on pins and needles even more than I would be anyway.. I so wish I could go back to the naive innocence most people seem to have about NT screening. It was bad enough screening positive, I have no idea how people who have a positive diagnosis cope with subsequent NTs.

thanks for your help!

9 days to go.. <nervous>

craftysarahp Wed 04-Sep-13 16:04:58

Hi
does any know if !80 deal is still available as someone said end of August and then end of September.

anyone know
thanks sarah

onceipopicantstop Wed 04-Sep-13 19:17:19

Hi crispyFB will keep my fingers crossed for you!!

CrispyFB Wed 04-Sep-13 20:04:30

Thanks onceipopicantstop

craftysarahp - when I went in on Friday, they said it was the last day of the deal and how lucky I was etc etc just scraping in. So I guess it is end of August. No harm in ringing and asking just in case they extended it though? Where did you hear September?

MrsDibble Wed 04-Sep-13 21:28:18

Good luck crispyFB - sure all will be fine.

I can't answer your last question because I had the scan and Harmony test at the same time, having already had an NHS nuchal scan.