Termination for t21 downs diagnosis

[Lookingforsomehope]

I don't really know what I'm looking for here but just feeling very lonely and scared and hoping someone has experienced the same.

i found out yesterday that my baby has downs. I'm 21 weeks pregnant and really wrestling with the idea of termination. I know lots of children with downs are so happy and don't know any different. But my concerns are really around the future. Any future children we have, the impact on them, medical needs he may have. I just don't know that it's something I can do. But the termination process at this stage just seems so scary and the idea of coming home from hospital without my baby so unimaginable.

I see so many posts from women who had no option. And I feel like I do have an option and I just don't want to deal with the life I would have with a disabled child and it feels awful. I'm supposed to be his mum, doing what's best for him

Hi, I’m so sorry to hear you’re going through this. I have been there - for another diagnosis but it’s such a difficult experience. This happened to me in 2020 - I terminated at 24 weeks. My girl had dandy Walker syndrome and wasn’t growing enough so I guess what helped the decision was that they said she most likely won’t survive after she is born anyway. With that said, even if she was growing fine, I would have terminated because of the dandy Walker as we wouldn’t have wanted to bring a sick baby into this world. I have a long post about the whole termination process - I wrote it to help other mothers know what to expect. 2 years later I know have healthy 3 month old son who I love so much. I’ll never forget my daughter - but ultimately it was the best decision for me and my partner. I hope you find peace in your decision. Good luck and stay strong; you will get through it!

Thank you for replying. The idea of termination and labour is just so scary. I wish they could put me to sleep and to wake up and it all be over.

I’m so sorry to hear you are going through this, my heart goes out to you.

I made the heartbreaking decision to have a TFMR a few weeks ago as my baby was diagnosed with Down’s. I was 17 weeks pregnant when I had a medical termination.

From your post it sounds like this is your first pregnancy. Have the doctors found any medical issues with the baby from your scans?

It is the most awful decision to make especially when it is a very much wanted baby. We had to weigh up if we felt we could support a child with potentially a lot of medical issues and needing extra care. It’s so hard when you don’t know the severity. We already have 3 children one with autism and we didn’t feel we would be able to cope but also we didn’t want our baby to suffer with potential heart surgery and the many health complications that are associated with Down’s.

www.arc-uk.org offer guidance through making a decision and the ladies are so kind. Perhaps this may be of help to you.

Having only just gone through this and still recovering emotionally I know how you feel. I felt lonely, isolated and so scared but you will get through this whatever you decide.

Happy to answer any questions you may have and sending love xx

It's my first baby. Maybe that's why it all just seems so scary.
There was fluid on his neck just. That's how they caught it. But I know half of babies born with DS have heart problems and more than anything I worry about when he gets older.

I'm not a mum yet and the idea of a healthy baby is scary enough let alone one that isn't healthy.

And there is no way to know severity. I know the media portrays the happy little kids and of course I get that little kids are just kids but they get older. Except downs kids don't really.

@Lookingforsomehope bless you. It was my first baby also. Have they done any further checks to confirm the condition? They picked up the problems at my 20 week scan and before they could be certain - I had to wait 4 weeks to see whether she would grow and confirm the dandy Walker via an MRI. That's why I terminated at 24 weeks. It was the most difficult experience I've been through but the procedure itself went well. They treated me so great and considering the darkness of the situation, I had a good day as they looked after me so well. I opted to take morphine and that really helped as you don't want to feel pain. I had an emotional week after and couldn't stop crying but I promise you it does get easier! Us women are so strong!! Don't feel guilty about opting for termination - there is nothing wrong with not wanting to bring a sick baby into the world. That's why the doctors do all these tests!

I'm so sorry you had to wait 4 weeks. The past 2 weeks have nearly killed me so i cant imagine how worried you must have been. When they picked it up I had to wait a week to see a specialist who did an amniocentesis and results came back on Tuesday. It's just so hard to feel him moving and kicking. I'm due to go for the first tablet today and just feel so sick about it.
I've seen a lot of people say the morphine made them sick so I didn't know whether to take it or not but you think it's OK?

@Lookingforsomehope I couldn't have done it without the morphine! They also offered an epidural but I got on just fine with the morphine. I wouldn't definitely take it and if you don't like it, then you can just stop. For me the process involved going in on Monday to stop the baby's heart beat with an injection through my tummy. Like an amnio I guess. Then I had to wait until Wednesday to be admitted and they gave me the pill. They give you a lovely private room with everything you need - I think I took my first pill around midday and in total I had two or 3 pills. Baby came out at 2am. You're going to be just fine. Stay positive. Take pain relief. Have a support partner with you - have snacks and everything and just remember you are doing it for all the right reasons!!! And you will have another baby if that's what you want. Thinking of you! Xx

Wishing you luck today. Like @bigheartlittleheart says you are doing this so your baby doesn’t ever have to suffer. Be kind to yourself. You will get through this x

Hello Lookingforsomehope, your name made me think of this website, maybe you've seen it already but I thought I'd post just in case hopestory.org/

There is a family in my town who has four children, and the youngest has Down Syndrome. His name is Joey and it's been a pleasure watching him grow.
He is friendly with everyone, his family loves him so much, and now he's in high school and is in the marching band. It's so hard to imagine their family without him. Not trying to guilt you out or anything, just wanted to say it's okay if you want to have your baby despite so many who would choose not to. Take good care of yourself!