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Pregnancy

Harmony test. Should I?!

33 replies

Skinnylegs33 · 13/01/2015 20:08

Hi,

I was wondering if anyone could give some word of advice on this? Am considering paying for a Harmony test;I've actually booked it for this THURSDAY but I am having second thoughts, mainly because of cost.
It is £400 (for a viability scan, blood tests and a nuchal scan in 2 weeks)that we could really do with. If I go there after 11w it will be £500.

Could anyone please advise whether it's worth having it done? What does it bring extra compared to the NHS testing?

I am 33 yo and 10w2d pregnant (dated by an NHS obgyn yesterday). Had the scan as I've had 2 mmc previously (at 6 and 7 w) - not sure whether the mmc bit is relevant, but I also have this "what if" fear to deal with.

Would appreciate any words of wisdom as I'm really confused. The fact that I got so far this time hasn't properly sank in and I want to do things right as much as possible.

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BatteryPoweredHen · 13/01/2015 20:16

In theory, yes, definitely have NIPT.

I would suggest you have a second generation NIPT test though, such as Panorama, as this is a lot more accurate for detecting trisomies 13 and 18 than the Harmony test is. You can also find out the sex of the baby a lot earlier (and more reliably)

The false positive rate from the NHS screening is approx 5%, whereas for the Panorama test it is less than 0.01%.

Also it carries no risk to your pregnancy, whereas there is a risk of miscarriage should you get a positive result from the NHS screening and have to have a CVS or Amnio.

There is quite a wait for the results though, which is pretty nail-biting, also if you are a larger lady, then the redraw (not possible to get a result) rate is a lot higher.

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nippey · 13/01/2015 20:21

Hi Skinny,

I had mine before Christmas but I didn't pay for it, my hospital is taking part in a study with kings where high and intermediate risk pregnancies are offered the test.

The way they judged the risk is the nuchal scan (offered on the nhs at 12 weeks) age, medical history, weight and results of blood tests.

I was an intermediate risk which gave me a 1:600 chance of a chromosome problem with the baby.

The choice was harmony test or the amniocentis test (needle in stomach) so I chose the harmony test, all that it consisted of was a blood test and a two week wait and I got the result that the baby had a very low 1:10000 chance of an issue.

If I were in your position, I would wait for the results of the nuchal and bloods and if you have a high/medium risk then pay for it.


Hope that helps!

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BatteryPoweredHen · 13/01/2015 20:25

Nippey, the trouble with waiting until after the NT test is that OP will be approx 12 weeks at the time of the NT scan, then another week on for the results of the bloods.

Give it another few days to arrange an NIPT, then 2 weeks for the results. That would put her at at least 15 weeks so, should the worst outcome be confirmed, the available options become limited.

I did mine on the dot of 9 weeks for this reason, time is of the essence here...

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Skinnylegs33 · 13/01/2015 20:39

Thank you both very much.

That's why I am considering doing it in the first place, because of the time. I did think of waiting for the NHS one. I will be 13w2d when the NHS nuchal is done. From then on booking the NIPT, having it done and receiving the results will take me to 16w probably which leaves me with very few options.

I don't have a high bmi (am a size 6-8), more like 8 lately so that shouldn't be a problem. My only issue is what if the pregnancy does not progress and I waste the £400; plus the anxiety of waiting for another set of results and attending another us, etc. But I guess I'll be anxious either way.

Does anyone know where in London I can get Panorama done and what are the costs?

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Zahrah5 · 13/01/2015 20:46

Hi

I had the Harmony package you are describing and it was worth every penny to me.
I was very anxious and was going to book early scan anyway so the packsge for us had great value.

Im not trusting NHS at all, i lived in US for long time and the healthcare is just on much better level so my expectations are different.
Im glad did not wait and rely on NHS.

Essentialy you need to realize that from NT scan might get risk results with which you might not be happy to live with. The age skews it a lot. So if you are over certain age you just will not get lower numbers.

Harmony or NIPT is most accurate, then NT combined and then tripple test.

I have my risk results from all the above test and can tell you how they differ.
NHS booked my NT scan on last possible day of performing this test 13w + 6.

But when I came they dated me 14+5 and test could not have been performed. I had to wait until 16w to do tripple test and got results at 18w so very very late. I would have died with worry if I would not have harmony already.

Regarding the scan, there was huge difference, NHS checked baby leght, heartbeat and head circumference. And told me my pracenta is low anterior..

Private scan checked all this plus many extra soft markers for Down and all organs, spine, stomach etc, so you know all this at 12w and dont need to worry as much for anatomy scan as you know your baby already has all those organs. Placenta was high posterior.

Later went to a fetal specialist overseas who did my anatomy scan at 18w and confirmed placenta same as private scan, opposite to NHS.

If you are worrier and want to know soon it will be worthy for you so you can move on and enjoy this wonderful time.

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slugseatlettuce · 13/01/2015 20:48

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Message withdrawn at poster's request.

BatteryPoweredHen · 13/01/2015 20:48

I had mine done here and they were just so lovely.

It cost £500 inc a really detailed scan - I heard the heartbeat too!

Good luck Smile

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BatteryPoweredHen · 13/01/2015 20:50

TBH, to avoid the possibility of a medical termination at post 15 weeks, I would pay any sum twice over.

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MissyBear10 · 13/01/2015 21:06

I had the same package you're describing. I wouldn't change anything. Gave us peace of mind. It wasn't just the test but you get an appointment with the key consultant if anything is spotted which is so reassuring.

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Skinnylegs33 · 13/01/2015 21:42

Thank you all.

slug I have been thinking the same. But then read more about it and realised that it's more like a lottery and if there was for something to be picked up on the NHS Nuchal Scan I would bang my head against the walls for not having the Harmony test done earlier.

battery that's where I had my first ever viability scan - it was a mmc. Don't know if I could ever return to that place; nothing to do with them, they've been extremely nice. I have booked the FMC which I believe is next door to where you've been.

Can't find Panorama being offered anywhere (except for the Portland Hospital, but there are no prices available on their website), I can only see Harmony Confused

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Observer78 · 13/01/2015 23:02

We had Harmony done, £400, and it does include testing for all 3 x named trimosomies above.

From the Fetal Medicine Centre Website :
The Harmony test analyzes cell free DNA in maternal blood and gives a strong indication of whether the fetus is at high or low risk of having trisomy 21 (Down syndrome), trisomy 18 (Edwards syndrome) or trisomy 13 (Patau syndrome).

When Panorama did a documentary on why there are so many stillbirths in the UK, the professor (who is an expert in foetal medicine) was consulted, he's the founder of the above centre - I feel he's a good authority to ask about these things.

There are many other clinics scattered across the country, make sure you consult a good one if you're in any doubt.

Personally, Harmony testing was the best decision we made, partly because I am an "older" mum (mid 30's) so my risks were higher, secondly- I'd had a number of miscarriages thus wanted to check how things are.
Money well spent as far as I'm concerned. Plus the sex of the baby was confirmed (for free), not that it mattered as we were just happy to be having a baby, but the sonographer had already told us during the pre-12 wk (private) scan Smile

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Sonoma · 13/01/2015 23:33

Absolutely do it. As well as the peace of mind the test will give you (the rates of detection are far superior to the NHS offering, you can read them on the FMC site) you will also get a better nuchal scan that takes into account other factors in your risk calculation done by a fetal medicine specialist. They are really excellent which is why I'd personally stick with the FMC offering. They are at the forefront of prenatal testing here. I got a lot of reassurance from mine and will return for the anomaly scan.
NHS tests won't necessarily pick up a high risk - they are not diagnostic tests, that is the point. Nor is Harmony, but it's so much more accurate as to be almost as good as one.

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emilypolks39 · 14/01/2015 11:22

this survey is for my university research project regarding older and younger mothers and the problems they face, whether social or healthwise. would really appreciate it if some of you could complete it. should only take a few minutes:-) www.surveymonkey.com/s/367GZBH

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sianihedgehog · 14/01/2015 12:43

I'm doing it. Same package at the Fetal Medicine Centre, I think. My appointment is next Thursday. I looked at how risk is worked out using the NHS method, and age is a big factor. As I'm 37, it's extremely likely that I'll come out as high risk. And CVS and amnio both carry a risk of miscarriage. After miscarrying in my last pregnancy I just can't face the risk of miscarriage unless I really know the risk is very high, and genetic testing like harmony is the only way I can see of really trusting that risk factor.

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Tranquilitybaby · 14/01/2015 13:29

Worth every penny for me!
I had an extopic and a mc last year and was a nervous wreck this time round. I know have a great set of results with v low risk for the three trisomies and know the gender of our baby (since 12+2). £400 well spent for the piece of mind for us.

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BettyButterchops · 14/01/2015 13:52

I'd agree with battery in that if something doesn't look good, it can all be dealt with sooner. Later results can be heartbreaking as a friend of mine found out. I've had 3mc and am now pregnant at 40 so I jumped at the chance for tjis low risk and highly accurate test. We scraped the 500 together as the waiting to see if this is a healthy preg is too much. I had it done a week ago and am awaiting results. Interestingly, the scan placed me at 11 and not 10 wks meaning the NT scan appt with the nhs may be on the late side. Chances are everything is just fine for us all, but for those of us very anxious to get some answers I think it is worthwhile. £500 is a lot of money but personally, I'm just so relieved to have such a option. Whatever you choose, I hope you have a smooth pregnancy and that you find what's right for you. X

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ToddlingAlong1 · 14/01/2015 13:52

I had the panorama test done at 10 weeks. I am in Ireland so because of no abortion here, they don't offer anything other than the basic scan, unless you go private. Unfortunately, I got an inconclusive result due to having a non viable second sac. The test was very sensitive and picked up DNA from a now non viable twin. So for me I lost my money and no results. Very rare. They offered me a 12 w nuchal screening which I took up and thankfully got a lowish risk considering my age - 38. For me, I was worried about getting a medium to high risk result and then not knowing what to do. Go for amnio and risk MC or do a harmony test then, but would be 15 weeks by the time the results came back and getting late to do anything about it. Despite throwing money away this time, I would do the same again.

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BirdInTheRoom · 14/01/2015 13:55

I had the Panorama test here www.uds.uk.com/non-invasive it's in Harley Street. I had it done at 10.5 weeks, got the results 9 days later and found out the sex! I came back low risk. It cost £395 for viability scan and the test.

The only thing is, is I had my NHS scan this week and I am nervously awaiting the results, wondering what an earth I'll do if they call me and say I am high risk - do I trust the Panorama test or go for amnio anyway, in which case what was the point in taking the NIPT??

I kind of wish I had had the package at the Fetal Medicine Centre (they didn't have space for me when I wanted it, which is why I went to the above place) as they also offer a very detailed nuchal scan as part of the deal which should put your mind at rest.

At UDS you would have to pay privately for the additional nuchal scan, but having said that, the Panorama test has excellent accuracy.

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Messygirl · 14/01/2015 14:04

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Message withdrawn at poster's request.

BatteryPoweredHen · 14/01/2015 14:27

Toddling I would kick up a massive fuss about that if I were you - surely the scan before the blood draw should have found the second sac? (sorry btw Sad)

The sonographer went to great lengths to check that there was def only one in there and wouldn't have proceed to the blood test if there had have been.

Also, if they are unable to get a result from the first blood draw, my clinic do a second for you free of charge. I'm sorry you seem to have had a bit of a shoddy experience Flowers

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ToddlingAlong1 · 14/01/2015 14:56

Hi Battery.

They did a comprehensive scan before taking blood and did indeed find a second sac. There was nothing in it at all, so they felt it should not confuse the result. Unfortunately, the test picked up extra DNA, so perhaps was not as far gone as they had thought. I went back at 13 weeks and wanted to try again, but when they rescanned the sac was still there and maybe slightly bigger than before. They felt the test would be inclusive again. I also asked for harmony second time as does twinning, but they said I was neither a singleton or a twin! So had to run with nuchal screening. Wasn't cheeky enough to ask for my money back. Blush They are a big referral centre, so obviously don't come across this very often.

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BatteryPoweredHen · 14/01/2015 15:02

Well, they were negligent, so you wouldn't be at all cheeky to ask for your money back. Panorama isn't suitable if there are twin sacs full stop, viable pregnancy contained in second sac or not.

I'm really sorry you were treated like this, especially at a sensitive time.

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PotteringAlong · 14/01/2015 15:06

I think the key question is whether you will terminate if there is a problem. If yes then it would be worth the money to make early decisions. If not, I would wait for Nhs testing.

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Skinnylegs33 · 14/01/2015 18:16

Thank you all for taking the time to reply. I am booked in at the FMC tomorrow at 12.30 Smile I am now confident I am doing the right thing.

Toddling I would have definitely asked for a rafund or at least part refund (let's say minus us costs). Really, it's not ok that they have charged you for a poor service.

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nippey · 14/01/2015 18:43

batterypoweredhen that is true, I wasn't thinking about the time pressure!

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