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?

Yes, exactly this. I know many downs adults some of whom live with their parents still and some who live in group homes with other downs adults and they thrive. Whole teams of well trained people live and work along side them to facilitate their independence along with their siblings and wider families. Rest easy with that.

I’m just putting my personal thoughts down and everyone will have their own, of course. I couldn’t go through with a pregnancy at 43 with a confirmed downs diagnosis. As upsetting as a termination is, I would know I was making the right choice for me. You will feel regret/guilt etc with whichever choice you make. There is no right or wrong, just what you feel is right for you and your partner. Good luck to you and whichever path you go down.

I agree it's a tough read but it's that poster's valid take and balances your own "don't be afraid of embracing joy" take that's right at the other end of the scale.

The first couple of years will be relatively
normal. Then 15 years of fighting for education and services. Then transition to adulthood and independent living. They will probably never be truly independent. Living with a chronic illness/disability is not what anyone wants.

I think deep down you wouldn't have had the tests if you were going to go ahead whatever the results.

I think the OP is looking for a range of experience and advice @SilverpetalShine

Sorry to hear you are in this situation.

I know this sounds morbid, but I think you should look far into the future, after you have gone. Will there be any other family to look out for them? Or will they be on their own? I think this is an especially important consideration for older parents.

Perhaps it depends where you live but I have a young DS with autism and gdd (not sure what ‘level’ I’d describe his needs, at least moderate- he has to go to a special needs school etc) and there really isn’t much help available from the LA in terms of respite or funded trips etc. I know others with more severely disabled children and it’s the same for them, even those who desperately need some sort of break.

I was quite taken aback at how little support system there is. My son needs speech therapy desperately but they are only taking on children with eating and swallowing difficulties.

I feel like you get given your initial diagnosis and that’s it. You’re just on your own and left to work it all out by yourself.

As someone who has a child with additional needs, who is facing the prospect of my child not being independent as an adult, I would just remind you that if you go ahead you need to be prepared to sacrifice your career/full time income/any income at all, marriage (most don’t survive high levels of difficulty and stress and women often feel extreme resentment if they are the one shouldering everything) and a traditional restful retirement with the opportunity to travel and please yourself. It depends entirely on your personality and perspective. Are you a glass half full, laid back person who is more than happy to live for others? Or is the ability to work, earn and have some autonomy and freedom over your life important to you?

I will also say my child does not have a happy life at all compared to her able siblings. She has pockets of happiness but her difficulties and differences are not really conducive to a happy life. I know nothing about Down Syndrome so that might not be the case for your child.

@SilverpetalShineI’m sorry, but that is my direct experience of working with a child with Down’s. It’s not gossip. I did a bloody good job with her but it was exhausting. I can’t imagine living with this full-time; I only had it 6 hours a day.

OP, one other thing I would say is, if you do decide to go ahead with the pregnancy, do some research into whether your current location has good services for children with disabilities. Services vary massively from one local authority to another, and it’s worth the upheaval to move somewhere with good support if you can.

I'm sorry for your hardship, but I really hate reading statements like this (I've seen it before on Mumsnet where mothers are candidly voicing they wouldn't have had children if they could go back in time etc ) imagine if your child could read that. That if you could go back in time you'd terminate them ?

I don't necessarily agree that you had made your mind up by getting the tests in the first place. I was naive about it - we were unable to have the initial tests done as they couldn't get a clear enough scan so they offered us further blood tests etc, which I rejected as I thought it wouldn't make any difference. When my daughter was born it was initially noted that she had some physical features indicative of Down Syndrome. This was reversed but it made me aware of how absolutely unprepared I was. You're trying to be as prepared as you can be which is great. I hope you find all the information you need to make your decision as best as you can.

When I was pregnant with one of mine the blood test came back high. I couldn’t not know, so I had an amino, despite the risks. At that point I knew I couldn’t continue with the pregnancy if there was a problem.
While waiting for the results I felt the first movements, and knew then that I would keep my baby, whatever the outcome.
Good luck with your decision x

OP I am sorry for what you’re going through. My older sister has DS and, whilst she has no physical limitations, only cognitive ones, she absolutely does not live a full life at all. This is massively in part to how she has been raised, though which is a whole other thread.

If I were in your position, I would not continue with the pregnancy.

There was a married couple in the paper years ago who said the same and they were bullied terribly for it. But they were the ones who had lived the life, their entire lives had to be built around a child who was by then in his 30s or 40s and who could never live independently. They absolutely adored him and that was plain to see, but they'd had a hard, hard life, they weren't well off, and they were constantly worried about what was going to happen to their son when they died.

We need to stop manipulating people out of their candidness.

Do you have a child with high level special needs?

Absolutely. And for goodness sake, do your research on local schools. Don’t let mainstreams sugarcoat what they will do for your child, as chances are, it won’t be very much. Their 1:1 TA (or whatever you call them in England) will effectively become your child’s teacher, with both of them being left to their own devices.
Please trust me on this, as I have seen it so many times. I went above and beyond every day for ‘my’ child, but the number of times I felt sad for her, wondering what the parents would think if they were a fly on the wall.

I don’t think honestly saying if they knew then what they know now they would make a different decision is a terrible thing at all. It’s honest and raw. It doesn’t mean they don’t love their child- it is important that the OP gets a range of views and certainly on this thread there have been lots and hopefully it helps the OP with their dilemma and helps give them peace whichever way they go

Pp is being v brave by sharing her truth, and we should respect that. She clearly does love for her child, but she's also acknowledging the immense challenges she's faced. What's wrong with that? Why should she lie and sugarcoat when that's not her lived experience.
Anonymous platforms exist for exactly this kind of honesty, and you don't get to police her feelings based on hypothetical scenarios. It's not like she told her kid that to their face.

I would be curious to know how many couples stay together in these circumstances. And what % of men are left with the majority of care for the DC.
I would always think long term and as a woman, always the worst case scenario.

This is a super hard decision for you both, sending you lots of love. I think going into pregnancy every couple hopes for a perfect, healthy baby. Later in life some of these babies have autism/learning difficulties/undiagnosed conditions that they had no way of knowing about in pregnancy. But to have a child is to take the risk of these unexpected things happening. Having a diagnosis already is an advantage as you can research, learn & come to an informed decision. ARC is a fab charity with lots of information for you. Whichever decision you come to will be the right one for you both. ❤️

I think another thing to consider is who will look after the baby/child/adult when the parents are no longer around.

I hate to say it, but I can't help it : so predictable on here : mentions of careers being spoilt etc. so predictable.

On Mumsnet everything about life seems to be about career. Hence everyone doing a joint competition to encourage others women to start families at 35+ like it's the least important thing of all. Then we have scenarios like this. This is the stark reality of people that (unlike the op) choose to not prioritise having children in the decades that we are biologically supposed to.

It makes me angry. This is the price we pay for feminism gone extreme and bauking at the idea of women prioritising children/pregnancy/family.

I have a career, but i happily went part time once I had my children in my life. I'd give the whole thing up if I could afford it (and I like my job very much ) but it certainly isn't a rival for the importance of my presence as a mother. And I don't care how that doesn't sound feminist or 21st century or "new think". This next generation or 3 is fucked if we keep on being blinded by "career career career".

Regardless of whether your child has downsyndrome, you will still be older parents to a child without additional needs. Both are equally hard work, both need just as much energy as the other.

No sorry this is completely untrue!

Children with additional needs are often much harder work and require way more energy.

My autistic DS is 9 and whilst friends with similar-aged kids are enjoying entering an easier, more independent phase of parenting, my son is still like a toddler in many ways. He requires so much more care and supervision. I know other autism parents who are still changing nappies and wheeling round pushchairs for their 10-year-olds, who deal with violent meltdowns, no sleep and big strong children who have no sense of danger.

I adore and love my beautiful gorgeous little boy but parenting a child with no disabilities or additional needs is infinitely easier, no question about it!