Confirmed Down syndrome - what to do?

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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?

Hi OP - I'm wondering whether it would sound derisive to congratulate you on your pregnancy anyway? I'm sorry you face this situation.

I observed a Down Syndrome kid at the airport a couple of days ago, relaxed and happy, and found myself thinking about the fact that people with Down have become so much rarer since I was young, b/o all the screening and presumably resulting abortions. In a way I think it's a loss for society; it reduces tolerance for people with different abilities and needs than the norm and robs people of the opportunity to learn how to communicate effectively across the boundary established by intellectual disability.

My best friend growing up was friends with a girl with 'mosaic' Down Syndrome, so relatively high-functioning. Her condition was very visible in her face and her behaviour, but she was fun to be around and well integrated. That said, if she'd fallen among uncharitable adolescents, it could have been horrible. She died long ago of a heart defect that was part of her condition.

And I've also observed a couple of mothers not coping with a child with Down, which was horrible, and I know people in my own family whose attitude to ppl with Down Syndrome is vile. You'd have to deal with that sort, too.

As per pps, there's no right decision in principle, just what is right for you. Feels right, is doable. And of course your intuitions may not be very clear either. I hope you can take enough time over this - not sure what the deadlines are for abortion in this scenario. All the best xx

I'm also in my 40s and pregnant for the first time with IVF baby. We are waiting for result for NIPT. Personally for us, we have decided to terminate if it comes back high chance even though it's so difficult. But it is such a personal decision and whatever you decide there is no right or wrong.

I just want to address people who said this might be your last chance. It is not, you could consider embryo donation. That's what we did after almost 10 years of IVF failures. If your heart is opened to it, it is an option to consider. Most of embryos come from young women although in our case it's from a good friend who's not young when she froze her embryos. We considered adoption but it is such a tough process and we were pushed to keep in touch with the parents who are mostly not in the best circumstances.

Whatever you decide, I send you love and hugs.

There aren’t if they did the NIPT. It’s a blood test my friend did which suggested her baby was very very likely to have DS (she does).
The amnio has to be done at a specific point of pregnancy and many parents opt out if they are keeping the baby regardless as the NIPT is fairly accurate when combined with modern scans.

There is supported living..

Maybe last chance for her own biological child is what people meant? And I say that with kindness. Embryo donation/use may not be something everyone is comfortable with.

No advice sweetheart but sending you hugs x

I’m really sorry OP this is a horrendous time for you.

I agree with the advice to think about what your situation is right now.

How is your relationship? How do you both cope with stress? What family support do you have?

Financially could you afford for one of you to give up work, work part time or both work part time if needed. You can’t know in advance but you can have a clear sense of how you might manage.

Ultimately this is such a personal decision but I agree there is no ‘wrong’ decision here and you shouldn’t be made to feel guilty if the decision is to terminate.

FWIW, I have long been very sure that if I was in this situation I would end the pregnancy.

I know what I am capable of and what I struggle with so in a situation where there was a choice, that would be my decision.
I have no doubt I would cope and do my best to be a good parent but I am realistic about my limitations and have very good insight into the challenges of raising and fighting for a child with significant additional needs.
I don’t want to sound cold here but I know myself. I don’t feel shame for that.

I wouldn't terminate personally but then I know all too well that children aren't always born with their disability.

My son suddenly became disabled at the age of 8 due to complications with an illness. It can happen to anyone's child at any time.

I'm sorry that you have such a difficult decision to make.

I know many DS adults that live in supported living. Truthfully it’s rare for many to live past their 60s but many do have supported lives and I know of several that work in some capacity.

My viewpoint to due to former job working with children/adults with disabilities and seeing so many with acquired disabilities they were not born with. Many due to illness, accidents etc or in my own child’s case he was born with his but it was not picked up until after he was already here.

There absolutely is yes but I think the reality is that most siblings do tend to feel they should be there & help, even if parents don’t force that responsibility onto them it does still exist.

I don’t have a sibling with DS or additional needs but I can well imagine if I did and my parents were no longer here that I would feel I should be the one taking care of them rather than a residential facility, or if we couldn’t provide the care and they had to be in supported living I would feel a responsibility to be there frequently, I’d worry about them, I would feel a duty to help. I think most siblings would feel that way.

A quick Google search says there is no evidence of Ross temp having Down syndrome
Even with Mosaic Down syndrome, there would be a degree of learning disability, which he doesn't appear to have.

It’s not true that you “know” you’re going to terminate because you had tests done, and I don’t think this is a helpful response to OP’s post. I had both pregnancies tested and would never have terminated if they came back positive as terminating for DS in my view is not ok, a life is not less valuable because the person is disabled. I just wanted to be prepared if they did come back positive.

The Down’s syndrome charity website https://www.wouldntchangeathing.org has some good information on it.

OP, I am very sorry you have had a difficult journey, it’s not easy, and I wish you well.

I think look at the long term care and what would happen after you both pass. Me personally i wouldn't want to be responsible forever until I die, also I'd be concerned what would happen to them after I died. I've worked with college students with downs, and they are lovely and very loving. But face many problems because they're not mentally competent. We had to resolve many issues that made them act out. Some were highly volatile because they felt frustration. My main worry was that some of these students were big men with the mindset of a small child. They can only understand what they want, not what they should do/have.

Yes of course there is but someone has to be responsible still. I am sure many siblings don’t just put a person who can’t live independent in a facility and never see them again. They are family and like I say I am sure they love them dearly and visit regularly but just personally if I knew ahead of time I would choose to not put the family in that situation. I appreciate others will differ and there is no right or wrong.

Easy to say that when you will never be in that position
I am in that position and I have made it clear to.my son he has his own life and he's not going to put it on hold for his brother
It would be very selfish of any parent to expect that.

I would do the same for exactly same reasons. But then again, it's easy to say when it's not my pregnancy.

I have not been in this position but when we had the tests in my first pregnancy we were sure that we would end it is something was wrong (mainly driven by my husband), when we had it in the second pregnancy we knew that we wouldn’t and it was more awareness. The difference between pregnancy 1 and 2 - we had experienced having a child and couldn’t imagine being without them.

If your view is that terminating for DS is not ok then you don’t ever have to make that decision. I don’t believe that gives you the right to have a view on anyone else’s pregnancy.

You will never be in that position, it's very easy to say you would do this and that when it's just a hypothetical situation for you.

Only you can make this decision. DS can mean an individual more mildly impacted, who can live happily and independently as an adult. It could mean a miscarriage or stillbirth, or severely impacted individual with major health needs. The individuals you see in the media are often those more mildly impaired or even with a mosaic form.

I also think it takes a leap of faith to believe that state-funded supported living will be there to an acceptable standard indefinitely. The way things are going with cuts is scary for everyone with disabilities and as a PP who works in the sector said, it's a constant and exhausting fight for resources. Unless parents are wealthy enough to put funding aside for the DC's future, I would be worried, and I do think that siblings would step into some gaps left by a failing system, as children tend to have to do with elderly parents.

As previous posters have said, there is a lot of variation in how the syndrome manifests.

A lot of people say that the Downs children are always so happy but the young woman I know has always been a bit grumpy. She has very little language and when she was younger she was quite violent towards other children. She also spat on people as a way to communicate that she felt they were standing too close to her. She now lives on supported accommodation. Raising her has taken its toll on her parents.

Just wanted to send support-please take advice with a grain of salt as only you and your DH can make the choice, and you are the ones who will live with it.
Good luck

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