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Harmony result high risk Edwards

(21 Posts)
user1493037965 Mon 24-Apr-17 15:50:40

I've just got my results back after a harmony test, had this due to nt and bloods giving me high risk for downs. It's come back low for downs but high for Edwards. I'm having cvs later this wk. Just wondered if anyone has had high risk for Edwards in harmony test but cvs came back fine? Obv clinging onto hope here but not really feeling it! Thanks

user1483719818 Mon 24-Apr-17 17:35:09

No experience of this but hand holding and thinking of you flowers

user1493037965 Mon 24-Apr-17 18:25:41

Thanks smile x

AprilSkies44 Mon 24-Apr-17 18:29:27

Message withdrawn at poster's request.

user1493037965 Mon 24-Apr-17 20:22:55

Thanks. I am pretty sure that the cvs will confirm it as can't see how harmony test can flag a high risk if it's not the case.

junebug121 Tue 25-Apr-17 08:14:15

Hi op really sorry you're going through this. I'm nervously waiting for my Harmony test results after a 1 in 13 risk for Downs.

I was low for Edwards and Patau's though, like 1 in 8000 so I haven't even considered coming back high for one of those.

Do you mind me asking what your risk for Edwards was from the combined NHS test?

Wishing you all the strength to get through this really difficult time.
x

user1493037965 Tue 25-Apr-17 10:51:04

Hi junebug, my downs was 1 in 47 and Edwards and pataus was 1 in 900 from bloods done at NT scan. Edwards wasn't even a consideration then.
When I got the call re harmony results yest all she said was I was low risk for downs but higher for Edwards. I asked for a ratio and she couldn't give me one. Which I found annoying. I asked if it meant the baby def had Edwards and she said well the harmony test is 99% accurate. Not helpful really. Good luck with your results x

amysmummy12345 Tue 25-Apr-17 10:57:08

No advice but thinking of you OP flowers

9deepbreaths9 Tue 25-Apr-17 13:28:51

As I recall, harmony is less accurate for Edwards and Patau's than it is for Downs (something like 92 or 93, rather than 99). When I was looking into this I found a research paper that had the figures, I'll see if I can find it, and post.

9deepbreaths9 Tue 25-Apr-17 13:34:59

I think it was this one; though it may be outdated: onlinelibrary.wiley.com/doi/10.1002/uog.14791/abstract

junebug121 Tue 25-Apr-17 14:11:58

Thanks for sharing your risk ratio op. The sooner that they replace these NHS tests with the NIPT the better because clearly they aren't useful a lot of the time.

user1493037965 Tue 25-Apr-17 16:47:06

Thanks 9deepbreaths. I spoke to ARC today and the lady there said not to be hopeless there is still a chance it could be okay. Also to make sure the hospital are doing both the full and rapid cvs results. It does seem Harmony is not as accurate for Edwards as it is for downs. So fingers crossed!

Amaried Tue 25-Apr-17 18:03:15

O

junebug121 Tue 25-Apr-17 18:05:49

Hi op, I don't want to give false hope but I've just seen on another forum that someone had a low risk for Patau's from the NHS but then a positive harmony test. She then did an amnio and it came back clear.
Have my fingers crossed for you
X

user1493037965 Tue 25-Apr-17 19:33:11

Thanks junebug, I feel a tiny bit more positive after my call with ARC anyway and reading your post. Roll on thurs and then the waiting game begins x

TheDisillusionedAnarchist Wed 26-Apr-17 03:35:16

Harmony is not the most accurate for Edwards but combined screening is even worse. We were very low risk at combined screening. DD had Edwards confirmed by amnio at 23 weeks.

I know of two families who had a positive NIPT for t18 but their child had normal chromosomes at birth so definitely still hope. Hoping you do get the all clear.

loka Wed 26-Apr-17 12:18:30

Hi op, I was in very similar position.did the harmony test after receiving high risk score for Down syndrome on nhs only for it to come back with high risk for Edwards on harmony.I waited till 16 weeks to have amnio which come back clear. I was prepared for the worst so couldn't believe the all clear.it is certainly possible to receive false positive result for t18 on the harmony test.hope it goes well for you x

KittyandTeal Wed 26-Apr-17 15:35:06

I don't have experience of a high risk harmony but our dd2 had edwards. She was diagnosed at 21 weeks after an amnio. We chose a tfmr at 22 weeks.

Can I point you in the direction of arc. They are a brilliant charity who can support you going through antenatal diagnosis and testing.

Harmony is not diagnostic but tbh if a chromosomal issue was flagged with bloods and then you have a high risk harmony I would prepare yourself for a screen positive cvs. I'm really sorry, I know it's not what you want to hear.

I'd give arc a call and maybe start thinking about your options if you do get a positive screen.

user1493037965 Wed 26-Apr-17 16:58:30

Thanks loka. That gives me more hope smile x

user1493037965 Wed 26-Apr-17 17:01:21

Thanks kitty, that's kind of where my head's at with it. I spoke with ARC yesterday and the lady said there could be hope. But obv it all hangs in the balance until I get my CVS results back. Got the procedure tomorrow so am guessing I'll have results by next weds x

AprilSkies44 Wed 26-Apr-17 19:04:20

Message withdrawn at poster's request.

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