1 in 2 chance for Down Syndrome – waiting for NIPT results and feeling overwhelmed

[TinyHeart]

Hi everyone,
I’m 33 and just got my combined screening results — I’ve been told there’s a 1 in 2 chance that my baby has Down Syndrome. I’m completely devastated and can’t stop thinking about it. This is my first baby, so I’m finding it really hard to cope with all this uncertainty.
My test results were:
• NT: 3.1 mm
• HCG: 2.88 MoM
• PAPP-A: 0.3 MoM
(taken at 11 weeks + 6 days)
I had my NIPT done two days ago and the earliest I’ll get results is next Friday, or if delayed, possibly the following Monday or Tuesday. The waiting is awful, and I keep thinking about the worst-case scenario — that I might need to consider a termination if the NIPT confirms Down Syndrome.
My 12-week scan showed that the baby looks structurally fine, with a prominent nasal bone and no visible facial flattening but I’m not sure how much that matters at this stage.
Has anyone else had similar results and gone through this waiting period? How did you cope? What were your outcomes?
Thank you for reading — I’m finding this really hard and would really appreciate kind, gentle replies. 💛

@lifeonmars100
Thank you so much for your lovely message and for thinking of me. That’s really kind of you. It honestly means a lot to read such warm words and to know that people care. The waiting has been so overwhelming, but messages like yours really do bring a bit of comfort. ❤️

@Huntrix
Thank you so much for your kind message and for offering to chat. That really means a lot. I’ve actually already made my decision that if the result does come back high chance, I’ll choose to terminate. It’s such a heartbreaking situation, but I’ve read so much about the additional risk: the higher chance of miscarriage later in pregnancy and the serious health problems some babies face and I just don’t think it would be fair for a baby to suffer so much.
Life can be hard enough as it is, and it breaks my heart to even think about it, but I know this would be the kindest decision. Thank you again for your understanding and for being so thoughtful. 💐

@Fletchasketch
Thank you so much for your message. I’m so sorry you’ve had to get that news. I can only imagine how heartbreaking and overwhelming it must feel right now. It means a lot that you reached out to me even while you’re going through this yourself.
This whole experience is just so hard, and it really helps to know there are others who truly understand. I’m thinking of you and sending you so much love and strength. I really hope you have good support around you. ❤️

@secreticanttell
Thank you so much for sharing your story so openly.
I can only imagine how much you’ve been through and how hard both of those experiences must have been. It means a lot that you’ve taken the time to write to me and to share both sides of what can happen.
Hearing that your second child is doing well after such worrying results gives me a little hope, even though this waiting period feels unbearable right now.
You’re absolutely right because it’s such a deeply personal decision, and people will always have opinions, but only we know what’s right for our own lives. Thank you again for your honesty and kindness. ❤️

Hoping you can find some peace amidst the waiting for the results. 💐💐

I remember the wait for the NIPT test results well and I am sorry you are having to go through this.

I was a lot older than you so it wasn't completely unexpected. We had suffered from infertility for the best part of a decade and it was our only chance at having a baby. But I also knew that i didnt want to bring a child into the world with DS. Then after the negative result i spent far too much time reading about false negatives and I really struggled to enjoy my pregnancy.

I hope the results come quickly and they're what you are hoping for.

@Unpaidviewer
Thank you so much for sharing your experience and for your kind words. I’m so sorry you had to go through such a long and difficult journey to get to that point. It must have been incredibly hard after everything you’d already faced.

I completely understand what you mean about the waiting and then still struggling with worry even after getting the result. It’s such an anxious time, and it’s comforting to hear from someone who really understands what it feels like. Thank you for your kind wishes ❤️

that is more than fair enough OP. Don't let anyone try and change your mind with stories about how their 'different' lives turned out to be a blessing.
Hoping for good news for you

@QuickPeachPoet
Thank you so much for understanding and for your kind words. It really means a lot to feel supported and not judged for my decision. I’m hoping for good news too just trying to get through the wait. ❤️

Op I’m sorry you’re going through this.

I was pregnant naturally a few years ago after multiple miscarriages and multiple rounds of IVF. We had the NIPT before the NHS screening without really thinking about it and I was knocked for six when I got the phone call at work to tell me our much longed for and much loved baby boy had DS.

We then spent c3 weeks waiting for fetal medicine scans and the CVS results whilst speaking to charities, reading books and generally researching about DS. As older parents with a limited support network and who (we thought) would be unlikely to have a sibling for our child we worried who would care for him when we were unable and, ultimately, we decided to TFMR. It’s the worst position you can be faced with as a parent and no one really knows how they’d react until it’s their reality.

I spent time during that 3 week period keeping my mind busy with work and doing jobs around the house like cleaning and painting the stair bannisters to keep my brain busy. It’s an awful wait.

I really recommend speaking to ARC.

Happy to answer any questions in due course if I can be of help.

Hoping your results come back with good news.

The NIPT also tests for very serious life limiting conditions such as Edward’s and Patau. Picking up these conditions early can save much heartache and pain.

As another poster mentioned above, the ARC is a great support in these times.

I’m nearly 23 weeks pregnant and and waiting for results from further genetic tests after finding about my baby has two serious congenital heart defects (often associated with Downs Syndrome as well as others).

I totally understand the pain, fear and grief when you get this kind of news about your much wanted pregnancy. I try and tell myself all the worrying and tears will not change the outcome - I choose not to worry or cry (too much…) until I know more and then I will cross that bridge when and if it comes.

I also believe things will work out as they are meant to, though I may not be able to see that right now. If I had known about the serious problems earlier on I might not be facing the possibility of having to terminate and deliver at 6 months, or if it goes wrong now it may save future heartache of a very ill baby maybe facing a short painful life. I do totally understand how the uncertainty is so awful and you desperately want your baby to be ok. All I can say (to us both) is cross the bridge when/if it comes and refuse to think about the ‘what ifs’ until you have the information you need.

Wishing you the very best

@Tigerrainbowlotus
Thank you so much for sharing your story. I can only imagine how incredibly hard that must have been after everything you’d already been through. It’s such an impossible position to be in, and I completely understand what you mean about no one really knowing how they’d react until it happens to them.
The waiting really is awful, and I’ve been trying to do the same, keeping myself busy just to stop my mind from running away with worry. I really appreciate your kindness and your offer to help. It means a lot. ❤️

@Welshdogwalker
Thank you so much for your message and for sharing what you’re going through. I’m so sorry you’re facing such a difficult and uncertain time. I can only imagine how painful and frightening it must be, especially being further along in your pregnancy and waiting for those results.
You’re absolutely right, all the worrying in the world can’t change the outcome, but it’s so hard to stop the thoughts when you care so much. What you said about crossing the bridge when and if it comes really resonated with me. It’s such a wise and grounded way to look at it, and I’ll try to hold on to that too.
I truly hope you get some reassuring news soon. Wishing you strength and comfort as you wait, and thank you again for taking the time to write such a thoughtful message while you’re going through this yourself. ❤️

@Mum4MrA
Thank you so much for your kind message. I really appreciate it - the waiting has been so hard, but words like yours bring a little bit of calm and comfort. 💐

I've only known children/adults with DS to be surrounded by love and smiles. Having said that, my experiences only include families that are intelligent and highly educated, with significant wealth behind them, and as individuals they are all endlessly patient and unerringly kind. The education etc matters when constantly wrangling with the authorities, advocating for your child. Wealth also helps because money worries are just one extra massive headache you don't need.
I don't think I could ever be that patient but the parents I know in this situation luckily are, and the children/adults with DS have all had the most wonderful lives.

If I recall (20yrs ago now) I had a 1 in 6 chance and was also an older Mum at 38. I had alot of similar thoughts and then sat myself down and said "what if" what difference would it make to how I welcomed them etc. I decided that it wouldn't make any difference to me, I would be entitled to grieve for a none DS baby BUT in reality I didn't think TO ME it would make alot of difference. I decided NOT to have any further tests and wait and see. No DS in baby. But testing further introduced more risk of miscarriage at what would have been 14 plus weeks and in an already high risk pregnancy, so I went with it, choosing to decide to sort it out when he or she arrived.

I really hope you get some positive results today Op 🫂

@BoudiccaRuled
I’m really glad it works out for those families, and it’s lovely that their children are surrounded by so much love and happiness. But for me, I don’t think money makes a huge difference if the baby has a serious condition. All the additional risks and complications are the reason why I’ve already made my decision if I do receive bad news. I just don’t think it would be fair for a baby to suffer that much. ❤️

@RB68
Thank you so much for sharing your story. I really appreciate you taking the time to tell me about your experience. I completely understand your perspective and how you came to that decision, especially with the risks that further testing carried at the time.
For me, though, I’ve already made my decision that if my result comes back high risk, I’ll choose to terminate. It’s such a personal situation, and everyone feels differently about what they could cope with. I really admire how calm and grounded you were through such a stressful time. ❤️

@pambeesleyhalpert
Thank you so much. That really means a lot. I truly appreciate your kindness and support. 🫂❤️

@TinyHeart this is such a tough situation for you.
Just to give another perspective, something's come up that they can test for which is giving you the anxiety and potentially difficult decisions to make.
But every pregnancy is a lottery and not everything can be tested for. And birth itself is not without risk.
My daughter had every test under the sun, textbook pregnancy and perfect planned C section. My grandson has turned out to have very complex needs including classical autism and a serious eating disorder. That said, he is the most wonderful child who we all adore and he gets and gives so much joy.
Hope you get your results quickly and get whatever support helps you before after.

This is lovely to read

i have no experience in this but I just wanted to say how heartwarming and lovely it is reading some of these testimonies of their precious babes. I hope you manage to feel a bit better about it all OP best of luck ❤️

Have you ever meet a DS child? They don't all suffer.