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 don’t have any advice or experience….but sending love to you all.

I think posters are being realistic about their own experiences, either as the parent of a child/adult with DS, or a carer, or sibling/close relative.

The anonymous nature of MN has allowed posters to be candid.

Personally, I have not concluded that SEN life is horrific for all concerned; many posters have written quite the opposite.

I think it varies, I said earlier that I turned down the tests and my Consultant said if knowing would help me be prepared then do it. He and the midwife who was present said they'd support me if I was nervous and promised me there would be no pressure if the test was positive.

However I had the opposite two years later when Consultant was detained with an emergency and his registrar announced time was running out and we needed to get the tests done. When I said I wasn't having any tests he got abusive, I ended up crying and eventually the midwife intervened and told him to stop. So I've experienced both reactions.

Autism is a huge spectrum my son is far more disabled by his autism than many people with Down syndrome
I didn't have tests prenatally becsuse fir me unless a baby had a condition that was incompatible with life I wouldn't have had a termination but these are mine and mine alone choices I'm not going to judge others.

@curliegirlie I totally agree. We did know during pregnancy that our daughter would be born with Down syndrome but felt she could still have a good quality of life. I’m not so sure I’d be so confident in that decision to keep going if I had read some of these posts. Our daughter is awesome and definitely not a burden.

As a woman with a husband,children and grandchildren on the spectrum no I would not test for it.

thats the thing though- you are dealt a hand of cards in life and we rise to the occasion when we need to. When we test these things we have a chance to alter the hand. We may or may not choose to but we have the opportunity. Some will and some won’t. Some have adversity that comes to them later in life, other have none at all. Life is messy. You may have chosen a different path if you had read this thread and that would have been ok. You didn’t and you don’t regret the choice you made. Everyone is completely different- there is no right or wrong in this situation. I know, with a heavy heart, which decision I would have made for many of the reasons outlined on this thread but I equally understand why you made the opposite decision. It isn’t about thinking a child is a burden but realistic about the challenges

We're mostly all on the spectrum in our family - the gc are too young to know one way or another - and I'm glad there is no test! Thankfully in my immediate family we are high functioning. Ds had lots of issues when he was young but is now doing great. My db was probably ND and I think ignorance around it when we were young made for a difficult life. He died last year and I think he had a sad life which upsets me greatly.
My great aunty said 11 of her 12 great grandchildren had been diagnosed as autistic. Dd3 is definitely on the spectrum and is being assessed for ADHD. I've had no major problems with any of them.

Conversely I know several families with a child with autism where the child is non-verbal, aggressive, very inflexible. Where parents marriages collapsed under the pressure, houses wrecked, TVs and IPads replaced frequently, younger children sent to live with relatives because they are not safe at home, police regularly called, unable to go out as it is not safe without two or three adult carers, houses locked down… and the child eventually sent to live in a secure hospital setting over a hundred miles from home. I would definitely not blame those parents if they could see what lay ahead and had decided to end the pregnancy instead.

The point at which you are making the decision, in pregnancy or perhaps PGT, they haven’t bonded with their child or got to know then, they are just considering what life would be like. This is the same as any woman who is deciding to have an abortion regardless of disability.

Im sorry OP. What an awful dilemma. I’m going to be blunt but having a DS child in our family - it would not be a choice for me. Cute and lovely as kids but a whole different situation when they are in their 30s. And you will be in your 70s?

Who will provide their care?

There are places that offer assisted living for people with disabilities .

Is that something you would want for your much loved and wanted child?

Well its something I'm going to have to consider yes many people do

And why do you think assisted living is so terrible, do you know anything about it ,presumably not.

I have worked in one and can honestly say it's absolutely not what I would want for my child

Well its something I have to consider, i don't want my okder son being his brother ,s carer as that's not fair

Where else do you suggest disabled people who can't look after themselves live
You can become disabled at any point BTW.

Of course you can, but OP is deciding on a pregnancy knowing this in advance, she has a choice

I know I have never once suggested she hasent I waa replying to a poster asking who would look after the disabled child when they are an adult ,the Op wants to hear all options and people are replying giving their own experiences pro choice means exactly that supporting women's choices even if it wouldn't be our choice

It’s an interesting question.

If we could test for everything then at what point would you have a termination?

Autism? Deafness? Blindness? Cerebral palsy?

My DD has autism and I find the idea that her life wouldn’t be worth continuing awful.

Are we only keeping perfect children now?

My hometown has what seems to be very good supported accommodation for adults with intellectual disabilities. Some of the residents have DS.

Our favourite cafe was often a stopping point when residents had a day out - supported by two assistants, they'd take the bus from my hometown to one of the villages.

I've said if I needed care or care for a loved one I'd choose the home where I worked. It was for people who need more care than assisted living but it was lovely. I did say if I got dementia would they have me but not the group they work with.

Lovely homely feel, long term residents and staff. Feels very much like a family. Lots going on with trips, activities, holidays.

Abortions happen with assumingly healthy babies too.

It's the same really. Women would weigh up their circumstances and decide if they feel like they can support a child with additional needs, some will and some won't. I'm pro-choice no matter what the reason including if it was possible to test for autism but personally, I wouldn't have an abortion unless the diagnosis was incompatible with life. That's my choice and others have the right to make their choice too.

There really are excellent homes but can be a challenge finding them. Where I worked we sometimes had parents who were very anxious as their child had been in a home that they weren't happy with.
They were understandably cautious but it was nice to see them relax as their adult child settled.

If it was me I wouldn't wait for a crisis or until age meant I felt I couldn't carry on. Id want to be sure they were happy and settled and enjoy my visits and maybe holidays with them. The good thing was when parents arranged a visit and their child said it would have to be another day as they were doing something with their new friends. That was when parents really relaxed. Of course that's what we all want isn't it, our children enjoying life.

I hope you find the perfect place for your son.