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 think you know what you are going to chose, as you would not have taken the risks to get test results if in your heart of hearts you didn't already know you were going to act on them

There is not right answer, both answers are wrong, and whatever you do you will likely regret it and wonder what would have happened if you had made the other choice. Sending you lots of love. I am sorry you are in this position

This must be so difficult for you OP- it's not an easy decision.
Have you looked at ARC (ante-natal results and choices)??
All the best to you both, with whatever you decide

Naturally it’s a shock to hear the news but you’re doing the right thing doing lots of research.
Many people with Downs are able to live independently and look after themselves. There is a lot of variation with how they are affected physically and cognitively. It’s impossible to know at this point.

Many other conditions are not detectable until after birth eg autism etc and can have a massive impact on the child and family. A diagnosis is just the beginning . Don’t just throw away this chance of happiness.

You’ve struggled to get this far, this baby is very special and may be your last chance. I would say give them a chance to live.

That must be so hard. Especially because there are different levels of disability with Downs.. I

Is this your first IVF attempt? Ease at falling pregnant may influence your decision? As PP said it’s a very difficult choice although I felt lucky to be able to have prenatal testing. Worth also considering how rock solid your relationship feels as parenting a child full stop can take its toll on a relationship and any additional challenges add to that. Statistics around mothers left alone to parent children with disabilities are disheartening. Wishing you strength in making your decision.

ARC are worth speaking to:

https://www.arc-uk.org/

i wish you all the best with what ever you decide to do.

The two adults I know with Down’s (one is a close relative) live healthy, happy, fulfilling, independent lives.

But like another PP, I think you already know this is a dealbreaker for you, otherwise you wouldn’t have had all the tests.

I never had any tests as I knew I would keep the child either way.

Just wanted to say I’ve taught lots of children with DS in both Special and Mainstream schools.
You will have so many questions and nobody can give you exact answers right now. Every child is individual and unique with their own personality.
Ability can vary greatly and the possibility of any medical needs too.
I have really fond memories of some absolutely delightful children with brilliant personalities and wonderful parents.
Where we live support is really good and an inspirational lady set up a charity which runs an inclusive nursery and early support. Her now adult DD who has DS works there.
I’d try not to think too far into the future though completely understandable.
If you can face it read Welcome to Holland. ( poem Emily Peal Kingsley)
Look on your LA SEN Local Offer to see what is available.
You might find support on specialist DS forums.
Sending a virtual hug.

Also OP, how accurate are these tests? I know some people have had incorrect diagnoses in utero.

I think only you can make the decision. There’s so much variation in people with Down’s syndrome and you never know how they will be affected. I know young adults with Downs that complete mainstream school (with considerable support) and are likely to live relatively independently in the future and another who, in their early 20’s has a developmental age of around 18 months and will always need round the clock care.

You do know that your child will have an intellectual disability and almost certainly some physical health issues. Autism is a common comorbidity with Down’s syndrome. My children have different disabilities and I can tell you that however much joy your child will bring to your life, fighting for the education, health care and social support they will need will break you. And it will never end. Every year will be another argument for the support that is written in their ehcp.

I am so very sorry, I think you’re faced with an impossible decision. People will judge you whichever way you go so take the right decision for YOU.

Happy for you to pm me if I can help.

I’m sorry you’re in this difficult position with a decision to make. However to those posters saying the OP already knows her decision otherwise she wouldn’t have taken the tests are awfully presumptuous and I think rude. Of course no one knows what you are thinking.

whatever decision you make, I wish you all the best

OP whichever decision you take will be the right one for you.

I'm a bit older than you - and had my DC 30 years ago. I knew then that any sign of DS I would not have continued the pregnancy. However times were different then and this was not an unusual route to take.

Other posters have offered some useful info which might help you to decide.

My advice would be to think beyond the baby and small child years.

Best wishes to you, whichever way you go.

So sorry OP. As others have said ARC would be worth reaching out to for a chat.

It’s a very personal decision, we agreed with both pregnancies that the results of the combined screenings would be as far as we went testing wise & it was for information rather than for us to make a decision on the pregnancy, that was our own decision though and I know others choose differently.

As you’ve already had all the tests I think you probably know your decision, but do seek support in coping with it.

It’s a no win situation to find yourselves in as another poster has said, I truly don’t think either is the “right” decision, just two different ones. Good luck x

I had a dc at 43...I opted for no tests as I know I would have kept dc whatever the results. A close family member chose to terminate at 17 weeks as further tests showed their dc had a lot more going on than just DS...
My dc was born completely fine. Family member still struggling with their decision..

For my first pregnancy I had the tests but would have probably kept the baby. I would have very much wanted to know and mentally prepare if the baby had Downs.

Some people like to be prepared. I found out the gender of my children in utero. Nothing to do with a preference, I just wanted to know!

Only you and your husband can know what is right for you, in your circumstances. What others would choose should have no bearing on your decision. No one should pass any moral judgement either way, or apply pressure in either direction.

I am sorry you are in this position.
x

I have no advice, just sending hugs and kind thoughts. You have such a hard decision to make, but you have to believe that whatever you decide, you are making the right decision for you and your set of circumstances. My sister went through a similar scenario, except she wanted the baby but her partner did not, and she felt she couldn't raise the child on her own. That was probably true, but it doesn't stop her from missing the child she conceived but never had.

I chose a termination after a positive DS test result. I was young, I wasn't ready for children, and definitely wasn't capable of raising a child with additional needs to the level they deserved. It was the right decision for me, though it was very hard. I have had "what if" moments, I have seen children who look like mine would have, and I have never regretted my choice.

Whatever decision you make, it needs to be what is best for you. If you're ready to take the leap and raise a child who will need more care, love and attention than you had planned- you will do it superbly. There is support for parents of disabled children, and you can get things lined up far in advance.
If you choose the other option, you're making a choice that you know is fair for all involved. It can be a kindness to prevent suffering- for you, for your career, your family.

Whatever choice you make, however you go about it, and whatever your reasoning is, you will not make a mistake. There is no right or wrong choice. Take some time, ask questions, speak to charities and support groups and medical professionals. Make a decision based on balanced research, and you cannot go wrong.

I'm thinking of you, and sending very best wishes.

It’s inaccurate to claim that only people who have decided to terminate will have diagnostic testing. I used to work for a charity for children with multiple disabilities and met many parents of children with DS who’d had prenatal testing and chosen to continue with the pregnancy. As you have learned from your reading there are many potential comorbidities including heart problems and parents will sometimes have to make decisions about surgery very quickly after birth. Researching beforehand makes these decisions less stressful and overwhelming.

As part of your decision I would consider the strength of your relationship (the odds weren’t great from the parents I met) and if you have financial security. Children with DS have various therapy needs. People living with DS also have a more than 50% chance of getting dementia, often at a young age, so residential care is often necessary in their senior years.

All the best for your very difficult decision.

I have no advice except to send hugs and strength. I had an unplanned baby at 42. My DD's genetic condition was not detectable before birth. She has Prader Willi Syndrome - not the same as Down's but the difficulties - meeting milestones, behaviours, the crumbling SEND system etc are the same. As an adult she has a very positive, happy life. She is just about to go into supported living 10 mins from us. However this has all happened because we have made it happen - pushing the NHS, Education, Social Services..endless list. We are truely exhausted and my life has been totally devoted to her for the last 25 years and will continue this way. We love her very much but I have forgotten who I am. Just be ready.

I would terminate.

Good luck whatever you choose.

Down Syndrome is on a spectrum: it ranges from high functioning, able to live fairly independently or with minimal support, to very low functioning and needing full time care for life. It often also comes with medical issues that will need to be resolve surgically when they're very young.

Also, important to note that statistically, a lot of marriages come apart when a child with a high level of special needs enters the picture.

You are absolutely entitled to do what's best for you going forward, and what you think life will look like for all of you should you continue the pregnancy or should you terminate the pregnancy.

When I had no children I imagined that I might keep a pregnancy with Downs syndrome. Now I have children and I know how hard it can be to raise a child who doesn't have additional needs, I wouldn't even consider continuing a pregnancy in those circumstances. And if that meant I stayed childless, so be it.

The visible people with DS you see on the media tend to be those less affected. And I don't think you can tell in advance how badly affected your child will be. I know a family with an adult child with DS. He is non verbal, tube fed and has numerous health issues. He lives in a residential home. I wouldn't want a life like that for my child if I could prevent it

There are numerous physical health issues that can go along with DS and your child will be facing these alone after you are no longer here to protect them.

I know I'll probably be flamed for this post, but I think it's important to consider all possible realities.

The only right answer is the one that you choose.
I would terminate reluctantly.

I'm so sorry.

I don't know if I agree with pp that having the test must mean you deep down intended to act on the result. I think many of us just want to know so we can make a more informed choice. I don't think it indicates you would always have aborted.

Something I think you have to face, brutal though it is, is that this might be your only pregnancy. I've been through IVF so I know how unpredictable it can be, and I sincerely hope you'd be lucky again, but given your age I wouldn't count on being successful a second time. What feels harder: having a child with Downs, or not having one at all? Do you have embryos in storage?