Confirmed Down syndrome - 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?

I would not continue if I were in your position.
Your lives will be completely upended.

(And Ross Kemp does not have Down’s syndrome.)

🤢

Yes, I agree with you in that respect.
It came as an almighty shock when my son was diagnosed with Down's at birth.

You are wrong. There is a right answer and the right answer for the OP is the one she and her husband decide to make.

Yes there will be moments of “what if” int the future, there always are, but as with any huge decision like this the decision you make is , at the time you make it the right one for you.

Circumstances do change, but the important thing to remember is that we make considered decisions based on current knowledge and circumstances ,so they are the right decisions for us at the time and that doesn’t change.

I would not continue in your position.
But it's a very personal decision. I think you should get some counselling straightaway from ARC, the organisation posted up thread which can probably advise better than we can.

This is so hard.
Someone close to us had this decision, there were other issues too, and decided they weren’t able to provide the life this child would need. It came down to being realistic about future care needs & actual financial situation. It’s been really hard on them though, especially as they were a much longed for child.
I think the thing to remember is that whatever decision you chose has to be right for you. And if you decide to go ahead with this, it’s ok to have times where you find it tough and want to scream. It doesn’t mean it’s the wrong decision if it’s the right choice now. And if you decide not to continue, it’s ok to grieve the loss - you’re not immune to all of those feelings or unworthy of them in any way. Whichever option you chose will be filled with mixed emotions.

I would say, if you decide not to continue, chose wisely who you share that with. Some people have very strong opinions and they’re not afraid to dump them on you (unrequested!) despite the fact it’s none of their business. Sending love x

No one should make a judgement on your choice as it will have an impact either way.

If it helps, my son was diagnosed with a life long disability and we don't know if he will ever be able to live independently. The difference is that I didn't know before he was born. We had fertility treatment too.

If I'd known before he was born, I don't think I would have thought that I could have coped with a disabled child, but we all have inner strength we are unaware of.

Does he make our lives better? Absolutely, and I am a better person for having him. Is it sometimes really difficulty and lonely? Yes, Absolutely.

Is he lovely? Absolutely and I am so pleased and proud to have him. Do I worry about life for him when we are no longer fer here? Absolutely - it's the thing that upsets me most.

Your choice is yours and you don't have to justify it or excuse it. You will make the decision with the best of intentions. Whatever you decide, take care of you too xxx

When I turned down tests my Consultant asked why. I said it was a waste of NHS money as I was keeping the baby. He basically said what you've said, told me he'd worry about his budget and if being able to prepare would help me I should have the tests.

I know people who have children with Downs, who are relatively high functioning but still do need a lot of support. The parents are all very positive.

I also have experience of working with a child with DS who was registered blind and non-verbal and (through my work) encountered others with DS who were non-verbal and unable to walk. The child that I worked with did not communicate with others at all.

I am so sorry that you are going through this.

No one should make a judgement on your choice as it will have an impact either way.

If it helps, my son was diagnosed with a life long disability and we don't know if he will ever be able to live independently. The difference is that I didn't know before he was born. We had fertility treatment too.

If I'd known before he was born, I don't think I would have thought that I could have coped with a disabled child, but we all have inner strength we are unaware of.

Does he make our lives better? Absolutely, and I am a better person for having him. Is it sometimes really difficulty and lonely? Yes, Absolutely.

Is he lovely? Absolutely and I am so pleased and proud to have him. Do I worry about life for him when we are no longer fer here? Absolutely - it's the thing that upsets me most.

Your choice is yours and you don't have to justify it or excuse it. You will make the decision with the best of intentions. Whatever you decide, take care of you too xxx

What's your support network like?

If you have very supportive, involved, local, available family and ride-or-die friends you could rely on for anything that would possibly factor into my decision.

As a parent of a DD with a disability- not as severe as some mentioned here- I would say that friends don't have the capacity to help these days. Everybody has their own problems.

I had the test done as I was give a 1:15 chance of DS. I already had a child and had seen, from my sisters experience, who'd had a child with high needs that had other siblings and I was not going put my first child through that.

My results came back negative for DS - but if it had been positive I would 100% have terminated.

How difficult for you.

My DH and I decided very early on we would abort for foetal abnormalities.

Roughly 15% of adults with down syndrome live "independently" but this is very rarely in the usual sense of independent.

On the other hand, in my family, someone chose not to have testing and their DC was born with Down’s syndrome and died in early childhood.

I don’t think anecdotes like your or mine are helpful at all. Indeed, I’m not sure Mumsnet is the best place to be looking for this kind of advice any more. Much better to reach out to the services and support groups set up for people specifically in OP’s situation.

I had the test that shows neck thickness but I knew that I would probably have kept the baby (although of course I can’t say for sure as the test came out fine) , so I agree that having a test doesn’t automatically mean you wouldn’t keep it, it could mean you want to be prepared.

I can’t advise as who knows what any of us would do if we haven’t been in that position. There’s a delightful little DS girl I have watched on Youtube called Indiana Feeks (her parents are country singers I listened to, the mother has unfortunately since passed away).

I have friends who have the most wonderful and loved children with DS, and have also worked alongside adults either DS.

Nothing can diminish the love the families have, or invalidate the lives of these individuals.

Would I choose to knowingly go ahead with a pregnancy once DS has been ascertained ?

Personally, and with the most cracked heart, probably not.

Whatever the immense upsides, it is a lifelong commitment. Yes, even with supported independent living. An emotional struggle and increasing administrative struggle as resources and support become scarcer and a postcode lottery.

Co-conditions seem very common and often cause distress.

Social life can be happy but also sometimes heartbreaking.

I feel horrible saying I would not personally go ahead, angry that so many factors are due to money and the behaviour of others.

I have a child with a physical disability and it has made life very complicated and upsetting at times.

If I had a child with DS I would not love them less. Not a bit. And once born could not find it in my heart to regret their existence. But that’s not the same as making a choice to have a child with DS.

He does not, that's a myth. OP, I don't know what I would do in your position. I would likely sway more towards not continuing the pregnancy if I'm honest, but I say that as someone who is 100% on not having anymore children anyway as I've completed my family so my opinion is just that. The main thing for me would be the fact you are only going to get older and their care needs will probably increase as they become an adult and what will happen to them after you're gone. But then you would love the child regardless and there will also be lots of happy moments.

I am so sorry you are in this situation.

I thought that IVF embryos were tested for Downs before implantaiton.

OP, there is a lot of very helpful advice and insight here. I was in similar position aged 37, we considered our whole family (existing older child age 9) our mental health and ability (but all babies are hard work) my partner's MH was not great anyway, and our ongoing ages were a factor . We have friends with a (unknown till birth) DS child who is doing well. We saw the strain on them as a whole at the time. We made the very difficult decision to terminate.
It took another 3 years to conceive which was very difficult time for us x
Our friends have set up a trust fund for future care for Thier DS child as they were also older parents. I do wish you love and peace whatever you decide x

I don't think Ross kemp has Down Syndrome??
It is a spectrum and the learning disabilities can range from fairly mild to profound ,but a person with Down Syndrome will have some learning disabilities and maybe some health issues too.
Op only you can make this decision ,my son doesn't have Down syndrome but he does have a rare chromosome disorder ,and he chased very complex needs, I won't lie it's hard work ,but at the same time he can be an absolute joy .

Does he really?

I agree with all the things you’ve said

No