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?

Children with DS are amazing. And bring out the best in the people around them.

What? Surely one can very well have these tests because if a child has a disability, you might want to get a support network in place and come to terms with that and prepare accordingly, not just because you would want an abortion??

When I had testing at my pregnancy at your age it was with the knowledge that I would terminate if I needed to.
Children without special needs are hard enough and DS has such a spectrum. At 43 you’ll spend the rest of your life caring in some way shape or form for another person with potentially high needs. You need to decide whether you and your partner can.
I have worked extensively with people with DS and they are as individual with people without DS but I couldn’t do this as a parent. Life is hard enough and if I had the choice I would end the pregnancy.

Some children with DS are amazing!!

Some are very poorly, some can't communicate, most don't live independently.

I wish people would stop glamourising disabilities.

I really feel for you, OP. I was in a slightly similar situation some years back. I agree with previous posters- whatever decision you make will be the right one.

Gosh just sending you love and strength for whatever lies ahead.

There’s no ‘right’ answer. As many have said, lots of children are born with disabilities that are unknown during pregnancy. But the reality (as seen by some of the replies) is that the NHS and SEN system as crumbling and it is not an easy journey….

I whole heartedly believe this has to be a focus for the government; families should not have to fight to the degree they do to get their children’s needs met. I work in the field and it breaks my heart.

SEN children are incredible and bring so much joy in to this world - but that joy can only be truly felt when the family have the system and resources to support them.

No matter your decision, know that you have made it with your eyes wide open and believe in yourself to do what is best for you, your unique circumstances, your unique situation as only you know what this could look like….

sending so much love. As someone who taught to have my little girl against the odds, I couldn’t help but shed a tear at your post. Really thinking of you.

My aunt has Down's and is quite mild. She used to work as a carer though has now retired (she's 70), she lives independently in a council flat where she manages her own spending, shopping, cooking etc. She doesn't drive but is fine using buses. She even goes on coach holidays by herself. She can read and write, though finds both quite hard. However, I know that it took a lot of work from her parents and sister to enable this level of self-reliance, and she still needs a lot of help. We have to set up and manage her accounts, her technology, her bank accounts etc, and always be on hand to offer any assistance as and when she needs it. Now her parents are gone, her sister helps enormously, and I'm doing more and more. I know I will be relied on increasingly as her older sister becomes less able to help, and expect to assume full responsibility for her in the next decade or so.

So even if your child is on the milder end of the spectrum, he/she will nevertheless need a huge amount of time, energy and money spent to allow her to live semi-independently, and this will need to continue after you are gone. If you have no other children, there won't be that automatic support network - and even if you did, there's no guarantee that they would be willing or able to offer their sibling lifelong support. My aunt has me, plus four nephews. None of her nephews offer any help.

Plus, I wouldn't count on the state fulfilling all their needs. My aunt was fortunate to be born when there was a real effort to help disabled children become fully-functioning members of society, so far as was possible. These days there seems to be significantly less interest in putting the work in, and so just put people like her on benefits instead. She had special schooling which meant her own needs were prioritised, whereas now she would have been stuck in mainstream education, falling hopelessly behind and feeling like a total failure.

She is very happy, and very much loved. There is obviously no question at all that given the choice, any of us - most especially her parents - would be without her. It will be a huge amount of work and a constant worry, but I don't believe you will ever regret it. However, though it feels evil to say, unless you have a great deal of money and a vast support network, I would terminate.

Does he?!

I read about a lad who was undiagnosed until 16, the physical characteristics weren’t very apparent so they assumed he had a mild learning difficulty until that point. And I follow a lady on Insta whose DD wasn’t diagnosed until 2, but that’s rare.

Op, a friend has a 4 year old with DS, they live an incredibly normal (dare I say mundane) life. They’re very happy and their son is joyous - I think he’s quite high functioning though. But he’s very sociable, laid back and sweet.

Could you get in touch with a DS charity and ask to visit a family who have a child with DS so you can see the reality of it? Good luck whatever you choose.

No one is uniformly amazing, with DS or without. They're people with their own personalities plus their condition on top of that. They don't exist to make other people better. This kind of happy clappy sweeping statement really isn't helpful.

For your next pregnancy, get the NIPT.

@voucherwowcher , 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.

Do you have any idea why we comment the way we do? I have a good reason to have replied, and although I didn't use the phrase you used, I worded my post carefully, as I am sure that others did.

I dont think he does ,some level of earning disabilities would be apparent if he did .

My daughter is 14, she has Downs Syndrome. If anyone had ever said they were sorry I would have slapped them, and still would. She is not to be pitied and nor are we as parents. She also has a younger sister. Someone asked me once what it's like to have a child with DS and I told them I didn't know as I had nothing to compare it to.
We chose not to have any pre-natal testing as we knew we would keep the baby whatever. Some choose pre-natal testing even if they wouldn't terminate so that they can learn about any condition the baby may have in advance, some choose testing so they can decide whether or not to terminate if the results show something beyond what they think they can cope with.
She went to mainstream primary school and did very well, with support. She is now in a secondary school for children with special needs.
She was born with a small hole in her heart which has now closed, she has no other major health issues.
Children do not come with manuals, none of them not just SEN ones. Yes, there is support but accessing it can be a battle. What support you get will depend on where you live.
Whatever decision you make it is entirely yours to make, take advice, find out as much as you can but don't be pressured either way. No judgement from me either way whatever you choose. If you would like to DM me to ask me anything please feel free to do so. Your lives will change hugely from not having a child to having one, that will become your new normal. It will be a different journey from the one you thought you might have but it is still as rewarding.
Ross Kemp does not have Downs Syndrome, Daniel Laurie and Sarah Gordy do, as does Heidi Carter, google them!

I'm sorry for what you're going through, OP - as others have said, it's an enormously difficult and painful decision to make.

The outcomes of Down Syndrome vary wildly - on one end, someone with it can be high functioning, and live independent lives.

But on the other, there can be a range of medical issues and more severe learning disability - my friend's boy with DS is 13, non-verbal, partially deaf, with poor vision, not potty trained, and had to be fed through a tube for years. He has had multiple heart surgeries. He's also getting increasingly aggressive, and she has to constantly fight for support.

I'd say have an honest think about what your lives and future would look like at the more severe end of the scale, and go from there.

My sibling had downs syndrome and lived to be in their forties. There were lots of underlying health issues and sadly there is s higher risk of early dementia which we experienced towards the end.

However they lived a full and fun life and lived each day as if it was their last. Our mother made sure that happened at the cost of having no life of her own.

I saw the happiness and reward but also the sacrifices needed, to the point I chose not to have children cos I was so scared to have a baby with disabilities.

My heart goes out to you. Very difficult decision to make. I think deep down you know the answer. It has to be right for you xx

I’d be thinking ahead of what will happen to them when you and your husband are no longer around or can’t look after them anymore.

I’m afraid I would terminate.

Unfortunately your story highlights the disillusion held by many on here about how it's "absolutely fine" to start your family late. Risks such as downs syndrome multiply significantly the older you are . I know in your case , being an older parent wasn't an active choice and it sounds as though you've had difficulty with conception - sorry you've had such a bumpy journey.

DS isn't the "negative" that it once was. There are far more debilitating conditions than DS. I guess the worries are (at least what my worries would be in this scenario) is the reality that the child will always "need" you in some caring capacity and are unlikely to ever be able to live fully independently as a fully functioning adult. That said, many many people with DS now are employed in various sectors, live outside of their parental home with some assistance, have romantic relationships, marriage in some cases. I think it's at the milder end of the severity of problems a baby can be born with to be honest. Many people with significant autism and learning difficulties never leave home and gave behavioural and communication difficulties and high physical needs (more so than in the case of DS)

Personally if it was a much wanted pregnancy and baby - I think ultimately I would keep the baby. But it's an extremely difficult decision. Extremely difficult. Realistically at 43, your chance of conceiving successfully via IVF again and the time scale is low , although not impossible. If you abort now, you have to be prepared that this decision may well be accepting that you will never become parents. Could you accept that ?

@DuckBee , in future, please check your facts before posting.

Could all the “I didn’t have the tests as I’d have kept the child regardless” posters please just stop. I can’t see how this is remotely helpful to the OP and just reads that you believe yourself to be superior to her. I actually do know people who proceeded with DS pregnancies following all tests, they just wanted to be prepared.

OP what a tough situation x I agree with speaking to ARC and also specialist MW at the hospital - you don’t have to rush onto anything.

No. Because I don’t claim to know how others are thinking

What do you mean by “live independently and look after themselves”. I have relatives with down syndrome and know others who are friends of theirs. I don’t know if any that live independently. At most they in supportive living with people supporting them daily to ensure they’re safe and well. It’s definitely a life long responsibility, in a different way to having a child who became independent as an adult.

Bloody awful decision to have to make. The level of disability varies and heart conditions are fairly common (about 50%). A friend's sister lives independently, although in sheltered housing, and seems happy. He has unfortunately died but I feel she will be OK as her disability is mild. Another was about the metal age of an 8 year old but despite her parents being told "she'll never walk or talk, put her in an institution and forget her" they didnt and were very glad as she walked, talked and brought joy to their lives. But she'll need carers if she survives much longer. They were pretty well off so could afford good support for her. Another is violent and becoming more difficult to handle as he gets older and stronger. I met him when he was in mainstream primary, it didnt work. His parents were fortunate to have a good special school for him.

Whatever you decide be kind to yourself.

I agree with this.

Wishing you luck with whatever decision you make.

OP I'm so sorry you're in this situation. There is no right or wrong answer here, just what your heart tells you.

Wait,what ? Ross kemp has Downs Syndrome?!I need to check what was in those paracetamol I took early - I think I'm tripping..?