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Original poster

Harmony prenatal test - anyone know about it

830 replies

RTchoke · 29/10/2012 05:41

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.

OP posts:
countrymumkin1 · 12/12/2012 16:42

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 · 13/12/2012 09:07

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 · 13/12/2012 19:49

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 · 14/12/2012 07:41

VioletElizabethBott that's an interesting point, and as someone with a previous t21 pregnancy also very relevant. Have a look at 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 · 14/12/2012 18:03

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 · 14/12/2012 19:58

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 · 14/12/2012 20:49

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 · 15/12/2012 02:13

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 · 15/12/2012 07:59

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 · 15/12/2012 11:00

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 · 15/12/2012 11:52

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 · 15/12/2012 17:20

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 · 15/12/2012 18:29

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

cath888 · 15/12/2012 19:49

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

BadMissM · 16/12/2012 11:01

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

VioletElizabethBott · 17/12/2012 12:50

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

cath888 · 17/12/2012 20:54

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 · 17/12/2012 21:27

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 · 17/12/2012 23:23

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 · 19/12/2012 20:59

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 · 19/12/2012 21:13

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 · 19/12/2012 21:53

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

lily06 · 20/12/2012 13:59

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 · 20/12/2012 15:09

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 · 20/12/2012 18:09

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....