Confirmed trisomy 21 - what to do?

[impossibledecision25]

I am 43 and this is my first pregnancy. We went though IVF to get to this point. We had several early scans that all looked fine at 6,8 and 10 weeks. However, we got to our 12 week scan and the nuchal fluid measurement was 6.5mm. Our initial screening came back as 1 in 2 for each trisomy. We then had the CVS test which confirmed our baby has Down syndrome.
My partner and I now feel like we have the most difficult decision to make. We want to be fully informed and so are doing a lot of reading. There are a lot of positive stories online but I guess the reality is we don’t know how what the full impact will be for our baby and what additional needs and co-morbidities they might have. We’re also thinking about what happens when we’re not here, especially as we will be older parents. And will be both still be able to work. But the thought of ending a much wanted pregnancy and a life feels so hard.
i guess I’m wondering if anyone has been in a similar position and has any advice?

Have they offered you any support in the hospital or advice on next steps etc? They should be able to have a look at vital organs etc on the scans coming up to tell if they are all working well etc.

I have no advice but just read and wanted to reply to you. Based on your age though it really is vital you think carefully about this. It would be awful to regret not going ahead and not be able to conceive again. I personally wouldn’t be phased by Down syndrome. I would worry if severe physical health problems were raised which would cause pain and suffering. But I assume nothing like this has been raised so far as a concern to you as you didn’t mention anything.

can the hospital give you a number to call for support? You definitely need support.

Hi @impossibledecision25 , I'm sorry that this discovery brings with it many worries. I thought I'd post a few links offering information and support.

I just wanted to say that there is a boy in our neighborhood with Down Syndrome who is the little brother of one of my daughter's friends, and it was a pleasure watching him grow up. Everyone loves him, he's a sweetheart and it's hard to imagine their family without him. This sounds like a miracle baby for you, and I hope that if you continue on, you never regret that decision.
https://www.dsdiagnosisnetwork.org/
https://www.downs-syndrome.org.uk/about/terminology-guide/
https://thearcalliance.org/down-syndrome/
https://www.ndss.org/resources/local-support/
https://community.babycenter.com/groups/a14515/down_syndrome_pregnancy

How are you doing?

Hi there,

I’m in the same position as you. What advice did you get and was it helpful?

I’m a 44 yr old single mum of a 4 yr old boy. It’s my second successful pregnancy which wasn’t planned. I have a confirmed CVS T21 baby at 13 weeks and not sure if I’ll be able to cope. I work full time and I’m apprehensive about what life would be like looking after a DS baby, toddler, child etc as I’m trying to be realistic and see the bigger-long term picture.

pls anyone help.