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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Devastating Combined NT Results

19 replies

UniqueCoralViewer · 23/07/2025 19:45

Hi, my first post here but if anyone has any positive stories with similar results I would be so grateful to hear them. I had my 12 week scan on Sunday and was so relieved to see the little heartbeat and all legs and arms intact - naively I hadn’t even really considered anything else being wrong but at the scan the doctor noted the nuchal translucency was 3.6mm (just over the ‘normal’ cut off) of 3.5mm. I tried to remain positive but the midwife when she called to follow up said that given my scan was on the earlier side that this measurement would likely increase. I went in for another scan today and it’s gone up to 3.9mm and the results from the combined test were >1 in 2 for everything (DS, Edwards' syndrome, and Patau's syndrome). My Papp A was super low at 0.07 and HCG was 2.08. They also said they saw skin oedema on today’s scan. Needless to say I’m absolutely devastated as this is a very much wanted pregnancy. I feel like I’ve won the worst lottery ever. I’m realistic in that I understand the prognosis is awful but just wondered if anyone had had these results and it ended up being ok? I’m 36 (37 at due date) and it’s my second pregnancy, very lucky to have a beautiful (but very mischievous) 20 month old. I won’t get my (initial) CVS results until next week and I know the wait is going to kill me, I can’t stop crying.

Devastating Combined NT Results
OP posts:
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Mrsttcno1 · 23/07/2025 19:50

I’m so sorry OP, no advice but I will keep my fingers crossed for you

TheIceBear · 23/07/2025 20:19

I am so sorry. The only advice I have is to phone Arc. I had some abnormal results in a pregnancy and found them really kind and helpful to talk to. Here is a link to the website and they have a helpline you can call.

https://www.arc-uk.org
I will keep fingers crossed for you as well.

Antenatal Results and Choices (ARC) – non-directive information and support before, during and after antenatal screening

https://www.arc-uk.org

UniqueCoralViewer · 23/07/2025 20:31

Thanks so much both. I will definitely give them a call first thing. X

OP posts:
writingsonthewall · 23/07/2025 20:34

my Son had a 6mm nuchal. They didn’t do the combined results I don’t think. Risk given was >1 in 2.

i had a cvs which was clear, and then a full microarray which was part of a trial of something. Then some fetal heart scans as thick nuchal can be a sign of cardiac issues. All were clear.

He’s 11 now and fine.

the odds aren’t great but they are just odds at this point

UniqueCoralViewer · 23/07/2025 20:39

Thanks so much for sharing this - I know it’s a long shot but so nice to hear that there may be a chance everything will be ok. Really happy it worked out for you!

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RT1620 · 23/07/2025 21:07

Wishing you all the luck. I just went though this in may. Third pregnancy after two healthy children. Age 36 also. Sadly we had a much higher neck fluid at 6.5mm and turned out to be patau. I done a lot of research and neck fluid under 5mm seem to all get positive results. Here if u have any questions x

UniqueCoralViewer · 23/07/2025 21:21

Thank you for sharing and so sorry you didn’t have a positive ending. Fingers crossed that the lower NT may help - I will update one way or another post CVS results next week.

OP posts:
Fraggeek · 23/07/2025 21:23

My results were very similar.

DS is now coming up for 5. He is autistic but nothing I was a high risk for x

Smile2025 · 23/07/2025 21:29

Sorry your going though this, having low papp-a can give a higher chance result for the 3 syndromes.
Your hospital will have a screening team, if you have any questions or need support give them a call.

Frankie2607 · 23/07/2025 21:44

Sorry you’re going through this. We had a 1 in 3 for DS. All came back clear and we now have a gorgeous boy. Will keep fingers crossed that all works out for you x

UniqueCoralViewer · 23/07/2025 23:07

Thanks so much to everyone for being so kind and taking the time to respond. It’s frankly been my worst day ever since the latest scan but it’s been so reassuring and helpful hearing from people who have been through similar journeys, whether good or bad. Will let you know how it goes next week but thank you ❤x

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RT1620 · 24/07/2025 15:15

Yes please let us know and good luck ❤️

writingsonthewall · 25/07/2025 08:00

Hang in there OP. Be good to yourself this weekend to pass the hours

UniqueCoralViewer · 29/07/2025 12:51

I just wanted to update so anyone researching like I was has an answer - sadly I’ve received the CVS results back and babe has Down syndrome. Thanks to those that recommended Arc who were really wonderful. Obviously not the results I was hoping for but if anyone is looking at this going through a similar journey (and really sorry if you are), I really did have the worst possible NT results you can get so don’t give up hope and I wish you a different outcome xx

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RT1620 · 29/07/2025 13:12

aww I’m so sorry. As mentioned I went through this 2 months ago. She had pataus and I ended up having a Mmc as we got to the cvs appointment her heart had already stopped. There isn’t anything anyone could say to me. Just look after yourself xx

SweetFancyMoses · 29/07/2025 13:15

So sorry, OP.

Frankie2607 · 29/07/2025 13:22

Really sorry to hear this. Sending you best wishes x

CommissarySushi · 29/07/2025 13:26

I'm sorry, OP. I hope you can be at peace with whatever you choose to do now.

writingsonthewall · 29/07/2025 13:30

I’m really sorry 😢

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