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. 💛

This just came up on my feed, so I didn’t want to read and run. My baby had same NT and absent nasal bone at the 11 week scan, and was high risk too. We did further testing (this was our choice) x

I don't think there's an easy way to make the wait any better. There's too much hinging on it to try and downplay it. Just try and be kind to yourself, and if you need to take a day off work to go for a long walk or whatever helps you get any breathing space, then do it. Best of luck x

@Rattles1
Thank you so much for sharing that. I really hope things turned out well for you and your little one. 💛

Hello
im 33, my chance of having a baby with DS was 1 in 1200.
I have a beautiful baby boy with DS, he is doing really well.

There are some websites to give you more information - positive about Down syndrome

it was unexpected for us but he bring us so much joy and everyone around.

it’s not the end of the world.

@Finsburyfancy
Thank you, that’s such kind advice. It really helps just to hear someone acknowledge how tough this wait is. I think I might do exactly that and take a quiet day to clear my head.

@Sabrina9872
Thank you for your lovely message. Hearing how loved and happy your little boy is genuinely means a lot right now. Wishing you and your family all the happiness in the world. 💛

I didn’t have the test. I would love a child with DS just as I would any other.

That's not very helpful. The OP is trying to make an informed decision.

@P0PTARTS
Thank you for sharing your thoughts. I completely respect that. My biggest worry is not knowing how the condition might affect the baby and whether I’d be able to give them the life and care they deserve. It breaks my heart thinking they might suffer.

My niece is also awaiting more test results after a scan confirming a DS. She was told that a centre in Birmingham would be doing the testing.

She already has two step children (6&8) and a DD aged 1. She is doing lots of talking to her close family who are being very supportive.
Lots of listening just now.

Agreed - and a wee bit judgy (perhaps not intentionally)

@SmallerTheSubj
Thank you for sharing about your niece. I hope her results bring good news and that she’s coping alright while waiting. Sending my best wishes to her and your family. 💛

I was in this exact situation 1 in 2 and couldn’t have got through it without the support from the charity ARC. Give their helpline a call in the morning if you’re not already in touch with them. Sending so much love.

No advice but just wanted to say I’m so sorry you’re going through this x

@intrepidgiraffe
Thank you for your lovely message and for mentioning ARC. My midwife brought them up too, but I wasn’t sure how they could help in my situation. Knowing they were supportive for you really encourages me. I’ll give them a call tomorrow morning. 💛

This is such a tough time for you up. The uncertainty when pregnant is so difficult. Be kind to yourself. Hopefully someone with more experience will be along soon.

@Mrsplants
Thank you so much for your lovely message. It really helps to feel a bit of kindness and support while waiting. 💛

@Newsenmum
Thank you for your lovely message. The waiting and uncertainty are definitely the hardest parts. I've lost my hope, but your words mean a lot. 💛

Sending you lots of hugs and kindness, @TinyHeart. You are in a very difficult place and need to make the right decision for you and your family when you have the information. Please talk to your medical team and those around you if feel able to. This next week will feel like an eternity and we are here to support you.

I have several friends who have undergone TFMR (conditions incompatible with life) and although it was extremely difficult and painful for them, they acknowledge it was the right decision for them. Only you and your DP know what is best for you. 💝💐

@Mum4MrA
Thank you for such a caring and sensitive message. I really appreciate you sharing that - it helps to hear from people who understand how complicated and emotional this can be. I’m trying to take each day as it comes and will talk everything through with my midwife and partner once we have the results. 💛

No advice but just wanted to send a hug your way ❤️

It’s such an awful thing to go through. I had the same situation 14 years ago and while not DS my baby was found to have a genetic issue which came out in further testing.

I really hope your outcome is positive but if not I would make sure that you research as best you can before making your decision and don’t be made to feel guilty either way (no one knows what they would do unless they are put in the exact situation).

I had TFMR and was wholly devastated by the whole situation at the time. I didn’t feel ashamed about my choice though and we still held a service for him with songs played and we allowed ourselves to grieve.

I have never once regretted my decision.

I have since had 2 beautiful children and I managed not to be terrified throughout my pregnancies with them which I was worried about, I was actually pretty chilled and zen through both my subsequent pregnancies (I paid privately for NIPT for both).

I often think I made the right choice for my first. The condition would have meant suffering and I made that choice on his behalf. I understand that people have different beliefs but actually the statistics across TFMR are relatively similar across all religions.

The whole experience made me so grateful of how strong women can be in the face of adversity, that a being a mother can mean different things at different times and to appreciate what you do have. I feel I am stronger for going through it, although it was a deeply upsetting time for my husband and I.

Be gentle with yourself at this time xx

@Sixsevern
Thank you so much for sharing your experience. You probably understand better than anyone what I’m going through right now, and I’m so sorry for what you went through with your first baby. I’m glad that you were able to have two healthy children afterwards and that things turned out well for you.
From what you’ve described, I truly believe you made the right decision for your baby and your family. I’ve been thinking about what I would do if my test comes back positive, and I feel the same way- I wouldn’t want my baby to suffer. This whole situation has been so hard, especially because it’s my first pregnancy and I so hoped everything would be okay.
The waiting and uncertainty are really taking their toll, and I’m trying to take it one day at a time. Thank you again for your kindness and for being so open, it means a lot. 💛

@ILoveSleeping
Thank you so much 💛

Thinking of you @TinyHeart 💝💐