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. 💛

I'm so so sorry. My heart goes out to you OP.

So so sorry to hear your news. Please feel free to carry on updating if you need to or find a TFMR group you can post on. I really really felt that I needed to share and talk about it and that can be really tough in real life.

It was honestly the worst time of my life but when I look back I feel like I was such a warrior and it taught me so much about myself and I felt I could cope with anything after that. Take care of yourself xx

@TinyHeart I am so sorry you didn't get the results you hoped for.
My little brother has DS, very independent and lives a full life, works etc. however my parents have been very lucky as you never know how DS will affect a child.
My sister had a TFMR as her baby girl was diagnosed with Edwards syndrome. She found the charities Sands and Empty Arms Bereavement Support, very helpful. She also joined some online forums for parents who had been through the same. The best advice she can give you is don't suffer alone, reach out for support.
Sending you lots of love at this difficult time ❤️❤️

@TinyHeart i feel like you’ve touched more peoples hearts and helped more people with their own difficulties than you will ever realise. You seem like a lovely, kind person. Thinking of you… although you had come to that conclusion yourself, having it confirmed is a totally different situation. You’re brave and you seem strong in your own mind. Any choice that’s the right one for you is the right one to make ❤️

I was so hoping for you that you would get better news
Be kind to yourself and trust in your decision xxx

Sending lots of love and support

Oh OP I am so incredibly sorry.
allow yourself to feel every single bit of emotion. You deserve nothing but happiness, the world is a cruel cruel place sometimes.
sending you so much love, strength and hugs ❤️

@TinyHeart I have watched and read your thread the last three days. You have dealt so admirably and eloquently with the anguish this whole set of circumstances brought and like everyone else I have been willing for happier news for you.
There is nothing anyone can say to change things for you but I hope that you can draw in some very small way some strength from the love and support we are all sending you across the virtual miles. There is no right or wrong here as with so many other decisions and crossroads we find ourselves at in life. As other posters have said better than I can please take care of yourself and believe that the choice you make is the best and a one made with love. I am so sorry.

Op, I’m sorry to read your update. I thought I would share some things that helped me when I went through this. I found some of these things particularly helpful given the T21 diagnosis as I found fewer people speak openly about TFMR when it is a “grey” diagnosis (ie it is not clear how the baby will be affected) and even fewer speak about a T21 diagnosis because of a worry about how people will react.

• There is an anonymous forum on the ARC website that is locked and only accessible to people who have had a TFMR. Lots of threads on there I found helpful to read and I also posted some of my own posts.
• ARC run some in-person support days where small groups of parents who have been through TFMR meet. These were SO helpful to me to meet other parents who had been through the same thing. Please look at ARC.
• I had counselling from Petals. Ask your hospital if they can refer you for counselling.
• ”Time to talk TFMR” podcast.

And finally, please DM me if you want to ask any questions.

It might take you a long time to process this but I promise this will feel less “heavy” in time.

I’ve been on the thread from the start OP and you’ve dealt with it all so well. I know you were prepared for this moment and you’d come to terms with the decision you’d make, but I doubt that made the news any easier to hear. I’m thinking of you and I’m sorry that this has been the outcome xx

Sorry to hear your update op
whatever path you go down it will be the right one for you

Oh OP...I am so very sorry for your news. My heartfelt wishes to you and your family xx

🫂

So sorry, I wish you and your partner strength during what I have no doubts is a difficult period.

The doctors have probably suggested this already, but may be worth having an Amniocentesis for completeness.

I'm so sorry @TinyHeart. you have been so brave in your journey and know you will continue to be but please give yourself lots of love and grace. I know it's the right choice for you (and would have been for me, for many reasons) but it doesn't make it any less difficult. Thinking of you ❤️

@TinyHeartI’m so very sorry to hear that. Please take time to make the right decision for you.

?

That emoji supposed to be two people hugging, even though it looks absolute nothing like that. 🫂

Sorry to hear this news. Wishing you strength in this difficult time xx

Hello,

I think you have made your decision but if you haven't...
I previously worked as a support worker and during this time worked with several adults who have down syndrome. They were my favourite people to support. Happy to answer any questions via private message if that is helpful.
I have so many good memories from my time spent with them.

I thought it was an old-fashioned video camera!

Sending you hugs at this terrible time. You have made the right choice whatever you decide. 💕

I thought it was a video camera all this time!🤣

oh deary me

Just to let you know you are in our thoughts during this difficult time x

@TinyHeart Thinking about you as you process all that comes with a diagnosis. Despite your handle, you actually have a kind heart as we can all tell by your responses to our posts. This child will be lucky to have you as its mother. Hugs to you.