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?

The patronising, anti-disability, anti-Down Syndrome rhetoric on this thread is awful. You think a person with an NG tube living in residential care can't be happy and can't have quality of life? Educate yourself more please!!! You were a paid carer for someone with Down Syndrome and would never choose that life? Well guess what - you're not the parents and your sense of love, bonding, responsibility, protection are not the same! Normal parents love their children, even with disabilities. You as a carer or distant observer or family friend really cannot comment with any real insight on this.

Parents also love children who live short lives in severe pain - but that doesn’t mean if they could wind back the clock many would not choose not to have continued the pregnancy rather than see their children suffer.

Not everyone has the same feelings about abortion and if you see it simply as ending a pregnancy then it is not about how much you might love a disabled child or how much you might bond with them. It is simply a choice of is this a path they want to take? If the choice was before pregnancy, as it is for many with inherited genetic conditions, then few would condemn someone for choosing not to have a child they know will be disabled.

I love my disabled child very much but it isn't all sunshine and rainbows and it's important to acknowledge that. It doesn't mean the child isn't loved, even if it is decided that the pregnancy can't continue.

I agree I have mixed feelings about this thread I love son very much and would never be without him, personally I wouldn't choose abortion ,but that's me and my own feelings
But I also wouldn't choose the life we have given a choice.

I feel exactly the same way.

I wouldn't have had an abortion if I knew my son would have had a disability from birth or if I was told that my son would become disabled at the age of 8 but if there was a way to erase his disability, I would in a second.

Of course they do as I said I have very mixed feelings about this thread my son has a,rare chromosome disorder which isn't tested for pre natally and he has significant and complex disabilities personally I wouldn't choose abortion but that's my personal choice but I also wouldn't choose a disabled child if i had a choice
What I mean is I wouldn't have chosen for my son to be disabled

I’m a mum to 4, our 2nd born has downs syndrome. Our 3rd has autism and adhd. Hands down autism and ADHD has caused us the biggest stress and hardest of all fights with the nhs and education system and if I had a magic wand I would take it away for them as they really deserve the absolute world.

our child with Down’s syndrome has been poorly, very poorly especially when they were younger. They went to mainstream throughout primary and we transferred to send education for secondary. The live a very happy life and are very easy to parent. They have very limited speech but are more than capable of cracking on with their daily routine with minimal interference from us.

There is a Facebook group called future of downs which you might find helpful.

The decision is yours, only you know what is best for your situation.

I haven’t been in your exact position, but I had a CVS done to check on a disease that during fertility testing my ex husband and I had learned were both carriers of. My kiddo ended up not even being a carrier of the disease and is now a beautiful 9 year old. But during this experience, we also had testing for downs and other things done. I can only really see this in retrospect, but it was clear that my ex did not want a special needs child. It was one of the many things that came out, only I didn’t quite make the connection until after our divorce. When my kiddo came early and was in the NICU, then followed by early intervention and eventually diagnosed with global delays, failure to thrive, asthma, and autism, the marriage became untenable. The divorce is equally untenable, but at least I don’t have to live with him. I wish that we’d had the difficult conversations and realized our fundamental differences. The divorce rate here is 80+% for families that have a child with special needs. It’s a huge challenge in my current marriage as well, so there is a need to be prepared for that.

I was prepared to end a miracle pregnancy if my baby did have Krabbé disease because it is 100% fatal and the babies die a horrible death after a horrible downturn of suffering. For me, other things like downs and trisomy 18 would need to be researched, which is why I wanted to include it. I just didn’t know my ex wanted the results for different reasons. It’s not that one of us was right or the other was wrong, it’s that this kind of decision needs to be unanimous or the relationship doesn’t survive. It may not survive even with both parents being on the same page for the decision. So sorry that you’re facing such a tough, personal and emotional decision. I wish you strength to carry you through.

What a beautiful and heartfelt post, my God I am glad that there are humans like you on the planet. I'm glad Reeve is on the planet and for your apt and modern analogy, perfect.

I don't think it means it's a deal breaker because you had the test. The tests are offered, the easiest thing to do is to say yes to the tests. But actually you don't imagine that you are actually going to have a positive, this makes you actually consider what it means.

I wish OP the best but wanted to point out that having a test isn't a decision

Thank you for your reply, you are so right. I was fully able bodied but now have a disability that affects mobility too so I empathize. I hate the ableist world for it's limited vision of those of us who struggle. It can make life difficult some times but here we are more power to both our elbows! 😎😂

This response was for @Roscameasdoody

Yes but in the health service they do assume you'll terminate if the test is positive. When I remarked I be keeping the baby no matter what (the test was done) they said "oh we wouldn't have done if we'd known".🙄

I find your post narrow minded and insulting. You seem completely unable to accept that quality of life and happiness can be massively adversely impacted by certain conditions (including DS) and that this is something that loving parents of course consider. Your insistence that someone with a NG tube living in residential home can be happy, of course completely ignores the fact that they could also be desperately unhappy and judge they have a very poor quality of life. The same goes with DS I know from personal experience that some people with DS find their life incredibly challenging and frustrating. This isn't always about those with the most severe struggles either, but those with enough understanding to comprehend that they are different from other people their age and will never be able to attain the things that their siblings and age peers will achieve. This can manifest as extreme unhappiness and frustration. The stereotype of the jolly DS adult couldn't be further from the truth for some people.

Fundamentally your views on the choices a loving parents can make will be rooted in your views about abortion and what this means. Personally I believe abortion can be absolutely what a loving parent would choose if they know that the fetus would go on to be a baby with a high chance of a relatively poor quality life or they know that the parents or family unit couldn't carry the immense responsibility of having a child and would struggle to meet the needs of that child whilst maintaining a reasonable quality of life for everyone else involved.

Plus there's the child that might be born instead of this child. A DS child is going to take up 9 months of conception time during which another entirely healthy child could be conceived. (It's more complicated than that but I'm sure people get the point.)

There's that child to consider, as well.

If there were a test for Autism would you (mumsnetters not OP) take it, and would you terminate if it showed a chance? So you as a parent are only willing to sign up for children that are perfect? I mean, this is eugenics.

What a load of insensitive nonsense.

I accept that people with Ng tubes can have good and less good quality of life. But you only accept that they can have poor quality of life. That is not balanced.

For the record, we have a lot of experience of NG tubes in our house.

No, choosing to abort is not 'eugenics'. What a horrifically insensitive thing to say.

What sort of Handmaid's Tale nonsense is this? I will choose to abort for any reason I think right. As is my legal prerogative.

I would terminate. You’ll be an older parent which would be a no from me to start with.

I think your life would be far too difficult as you get into your 50s and 60s.

Being an older parent can be wonderful, and presumably a point they had already thought through given OP had IVF at 43.

No, I don't only think that those with an NG tube have a poor quality of life but it is indisputably true that the worse someone's physical health then they are more likely to suffer from poor mental health and depression. It is also true that having some conditions will directly impact many of the 10 traditional measures of quality of life. Does that mean that an individual with any specific condition is guaranteed to have a poor quality of life? Absolutely not, but the odds will increase and this is something that many will consider when choosing to go ahead with a pregnancy.

The doom and gloom on this thread is unreal. Everyone needs to make their own choices according to unbiased, up to date, information and on the basis of their own family needs, but the main thrust of this thread and assumption that SEN life is horrific for all concerned, our kids will be a burden to everyone as adults etc etc., worst case scenario stuff, is incredibly galling. No wonder the termination rate is 90%. So many families must get scared off by threads like these. I am just so so glad my daughter’s diagnosis was postnatal, as I can see how easy it is to fall down these rabbit holes of despair when you get a high chance result or amnio/CVS confirmation, and that’s before you include pressure from healthcare professionals. I’m just going to leave this here….