Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

Pregnancy

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

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

305 replies

TinyHeart · 26/10/2025 18:46

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. 💛

OP posts:
TheMauveHedgehog · 31/10/2025 18:41

Sabrina9872 · 26/10/2025 18:53

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.

Very similar here. Two years older, same chance as you. Have a brilliant 16 month old next to me right now reading his book and signing along to all the pictures. He had veggie cheesy omelette for his tea then yoghurt and fruit. Today we went to soft play and then I spent the afternoon trying to stop him crawling into the washing machine while I did jobs. He loves his cousins and nursery and songs and wheels. He can’t walk yet, but he can climb. We have a lot of extra things to do for him, but it’s all been totally worth it and none of it unmanageable and our life is very very normal. He is an absolute joy .You need to do what’s right for you and your family, but please contact positive about Down syndrome first for support (they don’t judge what ever you choose to do) and ideally , if you feel able, meet some families that include someone with Down syndrome so you can make the right decision for you. I’ve never been in your position and my heart goes out to you. It’s not all been easy, and the shock after his birth was horrendous, but that was then and this is now and life is full of love and joy

intrepidgiraffe · 31/10/2025 19:01

Op - I hope you won’t mind me saying this on your behalf, but some posters here need to back off. Op has been very clear that she has made her decision in the event that Down’s Syndrome is diagnosed. She is seeking support with the unbearable waiting period. There is no doubt that there are people with Down’s Syndrome who live happy and fulfilling lives, but making the active choice to bring a child into the world who would be at increased risk of multiple lifelong difficulties is something op has decided is not the right thing for her child. Her decision should be respected.

TinyHeart · 31/10/2025 19:19

@TheMauveHedgehog
Thank you for sharing your story. Your little boy sounds absolutely lovely. I really appreciate your kindness. I’ve already made my decision if the news isn’t good, but it helps to hear different experiences and know people care. ❤️

OP posts:
TinyHeart · 31/10/2025 19:21

@intrepidgiraffe
Thank you for saying that. You’ve really understood what I’ve been trying to express. I respect everyone’s opinions and experiences, but I’ve made my choice and just need support while I wait. It means a lot to feel understood and not judged. ❤️

OP posts:
TheBroonOneAndTheWhiteOne · 31/10/2025 19:24

TinyHeart · 31/10/2025 19:21

@intrepidgiraffe
Thank you for saying that. You’ve really understood what I’ve been trying to express. I respect everyone’s opinions and experiences, but I’ve made my choice and just need support while I wait. It means a lot to feel understood and not judged. ❤️

Absolutely no judgement from me.
This has to be your own personal choice. You're entitled to decide for yourself, and I doubt if it's helpful for you to read some of these posts.

TheMauveHedgehog · 31/10/2025 19:45

TinyHeart · 31/10/2025 19:19

@TheMauveHedgehog
Thank you for sharing your story. Your little boy sounds absolutely lovely. I really appreciate your kindness. I’ve already made my decision if the news isn’t good, but it helps to hear different experiences and know people care. ❤️

Understood. Please ignore my comment then ( I hadn’t read the full thread when I posted, mistake learned from), but I do continue to recommend positive about Down syndrome to support you if you need to have a tfmr as I know they do that support specifically and will have people on their team experienced in your specific situation

But may I also gently ask you to consider your language around ‘not good news’ . Be specific if you can eg if there is trisomy 21.

MiloMann · 31/10/2025 21:49

@TinyHeart Best Wishes especially through the waiting time. I think your vocabulary choice of 'not good news' is fine, it is all a bunch of strangers need to know.
PM if you wish.

whiteroseredrose · 31/10/2025 22:48

Handhold from me OP, it’s an awful wait. I had to have an amniocentesis because it was 23 years ago which fortunately was negative.

I think the issue is less with small children and more with what happens decades down the line when you are elderly and have to think about what will happen to your child when you are incapacitated or die.

I had a lovely colleague who had a sibling with Down Syndrome. She met a gorgeous Aussie dentist and planned to emigrate with him. She got a lot of pushback from her parents who were expecting her to take over the care from them at some point. Her brother (I think) was still fully dependent upon his parents in his 30s, and always would be. There have been threads on MN about poster’s fears about what will happen to their fully dependant children when they die.

Finsburyfancy · 01/11/2025 05:34

TheMauveHedgehog · 31/10/2025 19:45

Understood. Please ignore my comment then ( I hadn’t read the full thread when I posted, mistake learned from), but I do continue to recommend positive about Down syndrome to support you if you need to have a tfmr as I know they do that support specifically and will have people on their team experienced in your specific situation

But may I also gently ask you to consider your language around ‘not good news’ . Be specific if you can eg if there is trisomy 21.

Well it's not good news is it. Give it a rest.

girljulian · 01/11/2025 06:08

Dear OP, I’m going to say something I wouldn’t say in real life but which is true.

If I was pregnant with a DS baby I would have it, but that’s because I’d love a baby of any kind and I can only get pregnant through IVF and even then I still haven’t managed it. I have a friend who has had a baby with her wife through IVF who has DS and she is a beautiful and lovely child.

HOWEVER

If I was a woman with no health issues, married to a man capable of impregnating me easily, I wouldn’t have a DS baby. I’d wait and try again. And there’s nothing wrong with that.

Fletchasketch · 01/11/2025 07:20

Hi OP, not trying to give you false hope here, but my high risk result came back very quickly, less than 2 days, we were expecting 5. I’ve seen similar on other threads. I’m sure there are exceptions to this where processing takes longer, but your long wait is possibly a good sign that you will have good news (and it would be good news). Good luck.

Bc87 · 01/11/2025 08:26

OP, I somewhat understand your worry.

I'm 21 weeks, we saw and echo bowel which was not a big deal but one kidney seems to be really affected and maybe it's an isolated incident, or I'm dreading it could be a genetic condition that progresses and the baby would have a difficult and short life.
I don't think we will know, just have to keep scanning throughout the pregnancy. It is so insanely hard. I have to start people I am pregnant soon, I can't even face going into work next week.

TinyHeart · 01/11/2025 10:41

@MiloMann
Thank you for being so kind. The waiting has been really tough, so I appreciate the gentle support and it’s nice to hear you understand what I meant with my wording. ❤️

OP posts:
TinyHeart · 01/11/2025 10:46

@whiteroseredrose
Thank you for your message and for sharing your story. It really is such a difficult wait, and I appreciate the handhold and support. ❤️

OP posts:
TinyHeart · 01/11/2025 10:51

@girljulian
Thank you for your honesty. I completely agree with what you said. It’s such a personal decision, and it means a lot to feel understood. ❤️

OP posts:
Bipitybopitybo · 01/11/2025 11:06

I’m sorry you are having to wait. I think that the only thing you can do is embrace that you know it’s the weekend so you know you won’t get a phone call today or tomorrow. Do anything you can to take your mind off it - - tv, podcasts, book. Hoping you get answers quickly next week

TinyHeart · 01/11/2025 11:15

@Fletchasketch
You’re such a kind person to try to comfort me, especially with everything you’re going through yourself. That really means a lot, thank you. ❤️
I’m not completely sure how these tests work. I had my blood taken at the Royal Infirmary in Edinburgh, and the midwife said it’s sent to the lab in Dundee. She mentioned it usually takes about 7–10 days and that they wait until they have a certain number of samples before starting, though I’m not sure how accurate that is.
I really hope you’re coping as best as you can. I know how horrible and heavy this situation feels, and I’m sure you’ll get through it. Life can be so cruel at times, with such painful lows. 😞
Thank you again for your kindness - it truly helps. ❤️

OP posts:
TinyHeart · 01/11/2025 11:30

@Bc87
I’m so sorry to hear what you’re going through. I really hope it turns out to be an isolated incident and nothing serious. I can only imagine how stressful it must be for you, and I’m truly wishing that everything will be okay. ❤️

I also never imagined that pregnancy could be this complicated. All of my friends had smooth pregnancies and healthy babies, so I never thought I’d find myself in this situation especially since I don’t know anyone close who’s been through something like this.

I completely understand how you feel about work. I’ve taken some days off myself as I wait for news, and I’m actually glad I didn’t tell work yet. I’ve been trying to hide my pregnancy for the last couple of weeks as my belly is quite prominent already.

I haven’t told my parents either- only my sister and a few close friends know.

My sister is pregnant too, just a few days apart from me, which makes things even more emotional. If my result comes back high chance, it will be really hard knowing her child will always remind me of what I lost. But I truly hope everything goes well for her and her baby. ❤️

It would have been perfect, us having babies so close together, but life can hit so hard at the happiest times. Sending you so much strength and hope. ❤️

OP posts:
TinyHeart · 01/11/2025 11:32

@Bipitybopitybo
Thank you so much for your kind message. I’m really trying to switch off a bit this weekend, but I’m suffering so much that I can hardly even leave the house right now. The thought of my phone ringing on Monday gives me so much anxiety. I’m just trying to get through each day as calmly as I can.

OP posts:
Bc87 · 01/11/2025 11:34

@TinyHeart thank you for such a kind message ❤️
Just like yourself, I mostly know people with healthy pregnancies only. It's so hard.
I understand how having your sister being pregnant at the same time is adding even more feelings to this already complex situation 😔❤️

TinyHeart · 01/11/2025 11:43

@Bc87
Thank you so much for your kind words ❤️
I honestly find this the hardest situation I’ve ever faced in my life.

Every other difficult thing that’s happened eventually led me somewhere better or taught me something but this time, I just can’t see how anything good could ever come from it in case my result comes back high chance. There’s nothing that could make up for this kind of pain.

The only way I can describe it is like standing on a beach and seeing a huge wave, like a mountain, coming straight towards me. I can see it coming, but there’s nothing I can do to stop it, and I’ve only got a few seconds to brace myself. It’s such a horrible feeling. 😔❤️

OP posts:
Rattles1 · 01/11/2025 12:29

TinyHeart · 26/10/2025 18:52

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

Sorry for the late reply. I understand how scary and stressful this can be , I never enjoyed pregnancy. My little girl is fine. We did do the needle test, they were clear, but nasal bone never did appear and there was always other things coming up, so it was constant worry. NT went down during course of pregnancy. They offered us a heart scan too - which is also a symptom I believe. She came out with nothing wrong xx

TinyHeart · 01/11/2025 13:11

@Rattles1
Thank you so much for sharing that. It’s really reassuring to hear your little girl is absolutely fine after everything you went through. I can imagine how stressful that constant worry must have been during pregnancy. It gives me a bit of hope to know things can still turn out well even after all those scary moments. ❤️

OP posts:
curliegirlie · 01/11/2025 15:26

TinyHeart · 26/10/2025 19:02

@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.

Whilst no one can predict how that third copy of the 21st chromosome will affect any individual child, I can tell you that you almost certainly will be able to give them the life and care they deserve. Some babies will have heart problems, and whilst I know from many families in my local support group it can be very scary at the time and in particular when they face surgery, I also know how well those kids and families are doing now, several years on, thriving and the children are constantly surprising their families and teaching them new things. My daughter is now 10, was born without heart defects, is in year 5 in a mainstream school, and enjoys drawing, colouring, playing role play games with her Baby and soft toys, singing along to her favourite songs, playing basketball, going to brownies and horse riding through RDA. I don’t think I know any child who suffers, and it’s amazing how quickly as a parent you fall into the advocate role and become your child’s biggest champion. My daughter was 18 months before she started commando crawling, nearly 3 before she walked, only had a handful of single spoken words at 3 (but about 100 Makaton signs!), but now she’s a proper chatterbox, walks and runs, does gymnastics and has a lovely group of friends at school who are wonderful with her and treat her as an equal.

As PPs have said, Positive about Down Syndrome is great if you want to read a variety of stories/experiences by different family members, as is the photography project Downright Amazing.

The Facebook groups Positive about Downs Syndrome and Future of Downs both have sub pages for prospective parents, and the Down’s Syndrome Association and Down Syndrome UK websites both have links to local support groups.

Good luck, wherever you go from here.

TinyHeart · 01/11/2025 16:20

@curliegirlie
Thank you so much for sharing your experience and for taking the time to write such a thoughtful message.
I’m really glad to hear that your daughter is doing so well. She sounds like such a bright, happy, and loving girl with so many wonderful interests. It’s lovely to read about how far she’s come and how supported she is by those around her.
I truly wish you and your family all the very best for the future. ❤️

OP posts: