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. 💛

@curliegirlie
Thank you so much for sharing your story and for your kind, understanding words. ❤️ Your daughter sounds absolutely wonderful, and I’m really glad to hear how well she’s doing that must make you so proud.
I’ve already made my decision, and I know it’s the right one for me and my situation. But I truly appreciate you taking the time to reach out and offer both compassion and perspective. It means a lot, especially at such a difficult time.

@Lottie123xx
Thank you so much for your lovely message. It really means a lot, especially knowing you’re going through the same worry yourself. 💛 I completely understand how hard the waiting is; it’s honestly one of the most painful parts.
I really hope you get a positive outcome and that everything turns out well for you and your baby. Please feel free to DM me too if you ever want to talk - it really helps having someone who understands. ❤️🙏

@Ncforthistopiced
Thank you so much for thinking of me and for your kind message. 💐 It really means a lot.

Ok. I had CVS twice around 20 years ago but I think we may have had to wait longer back then. It was for a rarer syndrome that we knew might get passed down and were going to make the same decision as you. Sorry you are going through this. I found the wait really tough

@IWantAShitzu
Thank you so much for sharing your story and for your incredibly kind words. ❤️ I can only imagine how difficult everything you’ve been through must have been, but your love and strength really shine through. Your little boy sounds so special - it’s beautiful how much joy and love he brings into your family despite everything he’s been through.
Stories like yours truly touch me and remind me how much strength parents can find in even the hardest situations. Thank you again for taking the time to reach out and for your support it means a lot. 💛

@PotOfViolas
Thank you for sharing your experience. ❤️ I can only imagine how difficult that must have been, especially having to wait even longer back then. The waiting really is the hardest part it feels endless.

I’m so sorry that your news looks likely to be bad. One thing that I would advise is that you take all of the support you can from the hospital. They do memory boxes if they are of any comfort, I also bought a teddy to go to the crem with him, a close friend who knew about it all got me some flowers to go to the crem and we picked songs to be played. A lady that works for the crem said a few words.

My husband and I attended the cremation together on our own (you don’t have to attend at all) but a cremation happens after about 13 weeks. We didn’t attend the ashes scattering, we just asked for it to be in the baby area of the remembrance garden.

Some people would prefer to leave the hospital straight away and that be the end of the journey and that’s fine too but I found it really helped me. You could bring a teddy and blanket to the hospital to go with them if that’s your option.

Either way is fine but don’t feel that you can’t grieve in any way you feel you need to xxx

It’s such a tough decision and I really feel for how hard this must have been to come to your decision. I remember having the tests and wondering what I would have done. On one hand I have worked with wonderful amazing children with DS who bring so much joy. On the other hand due to my age it was likely I would only have one child and both me and my husband have very little family when we die… knowing this child would have no one… I couldn’t have done it. There are no wrong decisions here. I wish you all the strength as you go through this.

Thinking of you today op. Hope you get results today.

We are all with you today OP.

Update if/ when you want to. Put all your focus into you and do what you need to do.

handhold

Been thinking of you today x

I hope you get your results soon op! I really feel for you.

I have been thinking and praying for you since I posted about my family. For you I wish you strength.

The CVS has confirmed T 21, as I sadly suspected it would. It’s honestly the worst moment of my life, and I’m still trying to process everything. 💔

I just want to thank everyone who has taken the time to write, offer support, share experiences, and send kind messages over the past days. You’ve all helped me more than you can imagine - truly more than words can say. ❤️

There are no words @TinyHeart , but know that you have so much support here. Take care of yourself 💔

I am so sorry to hear of the outcome OP. Sending you hugs and support x

@TinyHeart I am so so sorry. I can absolutely relate to it being the worst time of your life.

Yesterday I was beside myself with grief and phoned the ARC line and spoke to someone called Sally. Got straight through and told her I didn't really have any questions, I just need someone to talk to. She was so wonderfully supportive, gave good advice, but pretty much just let me wail. I know I'm not the first person to recommend them, but thought I'd share my experiences. I'd also recommend TFMR Mamas, have been reading through their stories and whilst I'm sure neither of us are there yet, there were lots of stories of hope and people who went on to have healthy children. Sending you the biggest hug at the worst time ever xx

Love and Best Wishes.
Milo

I am so sorry. Thinking of you and sending you love

@TinyHeartI came across this thread by accident just now and have read it from start to finish with everything crossed for a positive outcome for you and I’m so, so sorry this wasn’t the case.

I have no experience at all but I just wanted to say that you come
across as such a lovely person, your compassion and strength on this
thread has shone through - even when some posters have been a bit less tactful and compassionate themselves. I absolutely believe you are making the right decision for you.

Wishing you all the love and strength for everything that comes next. Take care of yourself ❤️

Very best wishes to you. There is no right or wrong answer for you now. I think you've touched the hearts of everyone who has been following your posts

I’ve followed your post from the beginning and I’m so very sorry to read your update. Sending you love and strength at what must be the most difficult and heartbreaking time for you ❤️

Didn't want to read and run @TinyHeart , just wanted to say I'm thinking of you and so sorry to read your update

I’m so so sorry 🫂

Oh OP this is the post nobody wanted to read. Everyone was praying for a miracle for you.
It is just awful news and there is no way to process it. But t least now the wait is over, you can prepare for the next stages and in time, come to terms with this terrible misfortune.
Please take all the support you can get. Be kind to yourself and allow yourself to grieve. There are no 'shoulds' in this.
I hope you have RL support, but please continue to lean on us. You have so much support here from total strangers who will be with you all the way in the next few days and weeks.