Down syndrome diagnosis Post CVS test next steps

[Ash2345f]

Hi All, we have recently received our diagnosis of Down syndrome for our baby. We are going through every emotion possible right now and considering our options. I am currently 17 weeks pregnant with a boy. My partner wants to continue with the pregnancy I don’t think I do. Does anyone have any experiences of this or anything they can share around children with DS and what their life looks like including theres. I am scared and confused in my heart I think I know what the right choice is for me thanks in advance x

He might want to continue but ultimately it will be you left holding the baby literally when life gets tough and he decides to bolt or be a weekend pastime dad so only continue if it is something you feel you want and can cope with. I’ve two friends .. one the child is non verbal and incontinent .. very sweet though and an easy child but they will never be in any way independent and need round the clock care. They are v rich though and can pay for it. The other lives at home but has a job and is v happy. It’s a life long commitment- I know all kids are but generally once they reach adulthood you get your freedom and life back , this never happens with a child with DS. Sorry to be so negative it’s just you will get loads of replies saying they are a gift etc , just want you to see the other side

You will get lots of people telling you they have a child / know someone with DS and it’s a lifelong joy. And for some it is. My friend’s son is in mainstream secondary school and, although he will probably never live independently, will be able to work etc.

yet it’s also a spectrum and you might have a child with lots of additional difficulties and it be a long long hard road.

the difficulty you now have is that you and DH cannot have what you both want, he will resent you if you abort a child he wants to have. You will resent him if you are forced to have a child you don’t want.

as horrifically hard as it is, I would approach this from the point of view that, whatever you choose, it’s very likely your relationship in its current format is over and you choose the best option for you.

I am sorry you are experiencing this. I have had this scenario. If you haven’t already, please look to ARC (antenatal choices and results charity). They offer counselling and there is an excellent forum for people who are going through the same thing as you are.

whatever you decide, it has to be right for both of you (and if you already have other children, for the wider family too).

I am sending you a lot of love. I know it will be feeling like a rollercoaster right now x

Oh OP I feel for you. How incredibly hard. My personal experience is that we had a baby boy with a post-birth diagnosis of Downs Syndrome. He’s now just turned 6 yrs old and yes, it can be hard. There’s no denying that fact. Luckily he has no medical conditions but he’s developmentally delayed, not yet toilet trained and still cannot talk properly. He is however in mainstream primary and he is genuinely a lovely little boy. Very social, plays with his siblings, loves to dance and sing - in many respects quite a ‘typical’ child. Still gets grumpy, whingey and has meltdowns!

We have tried not to change our lives as a family just because he has DS. We holiday, travel, go places as normal. He gets disciplined as we would his brother and sister. We don’t allow him to misbehave just because of his condition.

Personally I find the hardest aspect is all the constant advocating for him - the EHCP, the school support, the therapies etc.

In a nutshell, I think if I had found out about his Downs whilst I was pregnant with him then yes, I would have terminated. But, and it’s a big but, there’s absolutely no way now that I would rather he wasn’t here. He teaches us so much about ourselves - I embrace the small joys with him and he has opened our eyes to a whole new world. Not a world that is perfect or idyllic, but it has him in it, and that’s all we need. He is happy and utterly adored.

I think the fact that you and your husband are on different sides of the fence is a big issue, in the nicest possible way of saying it. I don’t really know how you reconcile that, so actually I probably haven’t been very helpful with my post, but I just wanted to say that the future with a DS child doesn’t necessarily have to be a dark and negative one. It’s just different. Sending you lots of love.

I know a young person with Downs. They live with their friends (who also have disabilities) like any other twenty something. Unlike any other twenty something they cannot work and live independently only with a lot of support daily. But they have a very good quality of life.

Sorry to detail the thread…how does the mainstream primary cope with the toilet training? IME they are usually strict on this topic and don’t have the setup/capacity to assist in this area.

Did you watch the documentary “Amber and Me”?

Hello, I would recommend that the only people you should take advice from, is from the parents of down syndrome children.

I think there's a lot of unwarranted negativity on this thread. Just because your husband wants the baby and you don't at the moment, doesn't mean you are not a strong couple.

It's a completely normal problem to have in this situation and you both need to go through all the emotions together.

Sure, your partner should support you whatever you decide, but his reaction right now seems totally normal and respectable, as does yours.

Highlighting this. This is a very important opinion, from a parent who has the right experience to advise you. It also seems similar to what most parents of down syndrome children say.
It's a very different perspective if you have someone saying 'I know someone who has a down syndrome child....' who is simply making a judgement about what they assume its like for the person they know, compared to a mum who is actually the one dealing with it firsthand x

I have a 16 month old with Down syndrome. Shock birth diagnosis. Very emotionally shakey first 3 months for me and an absolute blast and joy ever since. He has a minor heart condition, monitored yearly and low muscle tone so he isn’t walking yet…but he can climb, sign about 30 words, vocalise a few, play jokes, be cheeky and is loving nursery. He’s a joy. Obviously it’s super early days so I don’t know know what challenges he will face , but I wouldn’t know that wi the other children. In some ways I have more information as I know he will need support and our local authority has given us lots since birth. I have never been in your situation and I really struggle to imagine how complicated and hard that must be. But I now know a lot of parents of children with DS and they are all thriving as families, even though each family has a different experience with a range of challenges I know things may get harder. I also do find the appointments and paper work overwhelming sometimes, but if his admin is the worst bit then I’d say we are doing ok! Contact positive about Down syndrome, they are non judgemental and woll support you if you wants

Receiving a prenatal diagnosis must be a massive, massive shock. I have to say, my daughter was diagnosed postnatally, and although the delivery of the diagnosis was badly mishandled (completely medicalised and focussing on all the potential medical issues) part of me is glad I wasn’t faced with it antenatally, as so many of these threads spiral into scare mongering, which isn’t helpful when you’re trying to research and make an informed decision about where to go next.

Whilst no one can predict how that third copy of the 21st chromosome will affect any individual child, I can tell you that you almost certainly will be able to give them the life and care they deserve. Some babies with DS will have heart problems, and whilst I know from many families in my local support group it can be very scary at the time and in particular when they face surgery, I also know how well those kids and families are doing now, several years on, thriving and the children are constantly surprising their families and teaching them new things. My daughter is now 10, was born without heart defects, is in year 5 in a mainstream school, and enjoys drawing, colouring, playing role play games with her Baby and soft toys, singing along to her favourite songs, playing basketball, going to brownies and horse riding through RDA. I don’t think I know any child who “suffers” from the condition, and it’s amazing how quickly as a parent you fall into the advocate role and become your child’s biggest champion. My daughter was 18 months before she started commando crawling, nearly 3 before she walked, only had a handful of single spoken words at 3 (but about 100 Makaton signs!), but now she’s a proper chatterbox, walks and runs, does gymnastics and has a lovely group of friends at school who are wonderful with her and treat her as an equal.
The Positive about Down Syndrome website is great if you want to read a variety of stories/experiences from different family members, as is the photography project Downright Amazing.
The Facebook groups Positive about Downs Syndrome and Future of Downs both have sub pages for prospective parents, and the Down’s Syndrome Association and Down Syndrome UK websites both have links to local support groups.
Good luck, wherever you go from here.