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Original poster

High risk results for Downs Test - positive stories ?

57 replies

ReginaPhalange89 · 01/02/2019 22:18

I received a phone call today that my blood has come back as high risk for Downs Syndrome with a 1 in 34 chance . I have an appointment tomorrow to discuss what happens next , tests etc. I think we are going to opt for private testing as I know there's a risk of miscarriage with an amniocentesis

Just wondering if anyone else has had similar results and gone on to have better results at the next testing ? I'm terrified ! Trying to stay optimistic but can't put it out of my mind

OP posts:
pandechocolate · 07/02/2019 07:00

Hi OP. I had a 1 in 85 chance so we opted for NIPT, which came back as 1 in 10,000. I don't really trust the combined screening for downs and if we can afford it I will just have NIPT next time round.
I know what a stressful time it is whilst you wait for your results so sending love.

pandechocolate · 07/02/2019 07:05

Also while you wait I would ask them to break down your screening results. They had based mine purely on low papp a. Nuchal measurement was 2.9 so on the high end of normal but well within the normal range.
I was very angry about the stress the screening had put me through when I found this out.
I'm 21 weeks now and we were seen by a specialist for my 20 week scan. He signed me off as low risk and said baby is looking great. I have to have growth scans at 28 and 36 weeks because of the papp a but am not concerned at all about downs now.
I personally think I'm a study case for papp a, as I'm only 25.

So definitely worth asking!

Mayjane5 · 07/02/2019 07:21

@ReginaPhalange89 sorry I read your previous reply wrong thought you said you get results this week, but a week isn’t so bad I guess just keeping mind occupied in the meantime, do they phone with results or email/letter?

Original poster
ReginaPhalange89 · 07/02/2019 13:13

Thanks @pandechocolate, I did ask at the initial appointment what would have caused the high risk result but the midwife just kind of shrugged and said it's a combination of things that work it out , she didn't seem to know specific details . It was the quad test I had done rather than Cubs and I've heard it's less accurate.

The stress it has given us honestly makes me think I wish I'd just turned the testing down. I've heard so many people come back high risk and then be fine that I'm wondering why they even bother to provide the test ! It surely causes more stress than anything else

OP posts:
Original poster
ReginaPhalange89 · 07/02/2019 13:15

My mum was telling me last night about some program she had watched about the Cubs testing. There were 50 women, 45 were low risk and 5 were high risk. And only one person of the 50 had a downs baby and it was one of the low risk ones !!!

OP posts:
Original poster
ReginaPhalange89 · 07/02/2019 13:16

@mayjane5 I asked and they said it's usually an email, but the clinic I had my test at have an obstetrician and she will receive my results via email if they come back high risk so she'd call me. So I think if it's high risk I'll get both a call and email, low risk just an email

OP posts:
ReaganSomerset · 07/02/2019 13:18

It's still only a 3% chance, OP. That's a 97% chance that the baby doesn't have DD.

ReaganSomerset · 07/02/2019 13:19

*DS 🤦‍♀️

pandechocolate · 07/02/2019 13:23

I would ask if one of the genetics counsellors can ring you to discusd your results. One of then called me on the Monday after an initial conversation with the midwife, to see how I was doing. They kept in touch with me during the wait for my NIPT results and were honestly amazing.
They aren't actually counsellors so I don't know why they are called that!

Original poster
ReginaPhalange89 · 07/02/2019 13:23

Ah I know, thank you ! Just trying to stay positive and focus on that 97%

The lady that did my test last night said of all the Harmony tests she's done, only 3 or 4 have gone on to have DS. So fingers crossed it's good news next week! It's going to be a long week I'm sure

On the upside, we found out the sex at the scan :) were having a wee boy which I'm thrilled about as we have 2 girls already . So at least that's given us some lovely news to focus on while we wait !

OP posts:
pandechocolate · 07/02/2019 13:24

Oh congrats on your baby boy news, how lovely!!

Stitchosaurus · 07/02/2019 13:36

I think that’s a bit shit that they haven’t given you more detail about what’s caused the high risk. My nuchal fold measurement was very big (something like 6.1 I think) but my bloods brought the risk down to 1:54 and DS didn’t end up having any health issues.

Good luck and I hope the waiting goes quickly for you.

Karigan195 · 07/02/2019 14:23

I had my NIPT Tuesday. Didn’t even bother with nhs as they notoriously come back with panick inducing false positives. Due to have first boood tests on the nhs on the 25th.

If I were you I would just completely ignore the nhs result and await your harmony.

Also please remember that 29% of positives even on the NIPT are discovered to be false. That’s not 29% of people that go for it. That’s of those that are told it’s positive just under a third go on to have cvs etc and the risk is further excluded.

The NIPT is a darn good way of screening whether you need to run the risk of the invasive tests however.

Personally I’m quietly bricking it waiting for my results. Fingers crossed your harmony is clear.

Original poster
ReginaPhalange89 · 07/02/2019 14:28

Oh really ? I thought it was apparently like 99% accurate ? 🤔

Fingers crossed for your results too Karigan ! It's a horrible wait

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Karigan195 · 07/02/2019 14:30

If it’s a negative you can trust the negative but there is still a margin of error on the positives. enough that you should consider the invasive tests before acting on it.

Dyingforchocolate · 07/02/2019 14:34

Mines was 1 in 110, we had the harmony testing as the risk of miscarriage with amnio was greater than the risk of ds. They didn't really explain to me either why it was high risk or anything and I think that made it worse not knowing. I had the harmony test carried out by the nhs hospital and had the results back within a week. The hospital called me with the results and then posted the letter they got by email, the results were low risk so I didn't really expect a follow up letter. Good luck & I hope the results don't take too long for you, I know it can be awful waiting on the results x

Original poster
ReginaPhalange89 · 07/02/2019 14:34

Ah ok !
Tbh I think even if it comes back positive we wouldn't have the invasive tests, we've kind of decided now that it doesn't really matter , we would still continue the pregnancy . But i guess we won't really know how we feel for definite until we actually have results!

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L0kiWh0 · 07/02/2019 14:41

Good luck for your results. That’s a lovely attitude I can see in your latest post and it’s refreshing to see.

Original poster
ReginaPhalange89 · 13/02/2019 12:21

This wait is absolutely killing me 🙈 literally checking my emails every 5 minutes for the last 2 days. I can't think of anything else!

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KatnissMellark · 13/02/2019 14:00

Please check out 'Dont be sorry' on Facebook. Even if your DS turns out not to have DS, it's a great read and always brightens up my day.

DownRightAmazing · 13/02/2019 14:10

Hi OP, I feel for you. I remember the AGONY of waiting for the NIPTY result - such torture.

I had my baby girl in 2015. At the 12 week scan my results came in as a 1 in 3 chance of having a baby with Down's Syndrome. I went on to have the NIPTY/harmony test on the NHS as my area was doing a trial. The 2 week wait was awful :( Finally the results came in and confirmed that my beautiful girl would indeed have Down's Syndrome.

She was born at our local hospital, she came straight to me for cuddles and we went to the ward together. She is now 3 and as cheeky, charming and challenging as any other 3 year old :) I consider our story to be very positive - my husband often says that every family should have a child with DS. She reminds us to slow down and take joy in the little things. She is an amazing sibling, she brings such fun and laughter to our family.

I wish you a peaceful time as you await your results. If the result is positive - please don't worry, please reach out to the Down's Syndrome Associate and join the parent-led Facebook group Future of Down's and we will help you see the light at the end of the (very short) tunnel. Safe pregnancy OP.

Original poster
ReginaPhalange89 · 13/02/2019 17:22

@DownRightAmazing thank you so much. I'm sure I'll be gutted if they come back positive but I know we will be just fine ! I just want to know either way, the wait really is awful

I phoned a customer service number and they said I should have the results tomorrow afternoon so not too much longer to wait. Everything crossed !

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Original poster
ReginaPhalange89 · 14/02/2019 10:50

Just an update for anyone following!

Our results came back this morning, finally! All negative , a healthy baby boy ! So relieved.

Good luck mayjane5 when your test comes around , and anyone else waiting on results !

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Mayjane5 · 14/02/2019 11:30

That’s lovely news ☺️ Glad everything is ok and now you can start enjoying your pregnancy xx

Cremeeggsareforever · 14/02/2019 13:42

So pleased for you. Now relax and enjoy being pregnant! :) xx