Confirmed Down syndrome - what to do?

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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’m sorry to read that you have found yourselves in this situation. It is a truly difficult decision to make.

We have a 21 year old son with DS (and DS 20, DD 15, DS 14). We were in our mid twenties when he was diagnosed at birth. It was a colossal shock. He has always been adorable, funny and most importantly fit and well. Mainstream school and now in Mainstream College doing a Hospitality course. Swims at a very high level three times a week. Has a (very) part time waiting on job. He is moving to supported living next Spring.
Our other children adore him and they certainly would never imagine a childhood without a sibling with DS. He is an important part of the jigsaw of our family. Our other children have benefited from having a sibling with SEN in that every achievement no matter how teeny is joyously celebrated and milestones happen when they happen for them all.

However I was 26 when he was born, it was a birth diagnosis (so thankfully we didn’t find ourselves in your situation). And had young grandparents on both sides.

So we are in our mid 40’s now. It has been a rollercoaster ride. Not as far as caring for him, as he more than makes up for the extra time and care that he required. And I adore very bone in his body. But the involvement with additional services, meetings at school, advocacy for health and finance. It has been a learning curve. We are almost at the point where we’ll be able to have some time travelling as a couple when he moves out and the others become more independent, simply because we were almost 20 years younger than you are. Although, thats having kids anyway.

If I found my self pregnant today (would need a bloody miracle as I’m post-menopausal 😂) I would be strongly leaning towards termination and if there was a DS diagnosis I think it would be a definite. But that is bearing in mind our situation and our family is complete (and expensive enough).

I’m sure my ramblings haven’t helped, but that’s my ten pence worth. Sending hugs and please feel free to PM me.

Oh yes, I’d take away her associated struggles in a heartbeat, but as you say, Down’s syndrome is chromosomal, completely part of her. Who knows what she’d be like without that extra chromosome.

I have hemiplegia and it’s a lot easier to say I wish I had more control over my left hand or that my legs were steadier.

If I could take away my son's disability, I would. In an instant. He wasn't born with his disability though and I wonder if that makes a difference.

Please do not feel you have to justify why you chose to have the CVS done. You did what was right for you as a family.

Whatever you decide I send you all the best wishes as I know this is a very difficult time.

Sorry me again. Maybe one way of weighing things up is to think of what your deepest feelings would be if you were to find yourself miscarrying. If you think that there would be any feelings of relief then maybe you know where your decision is placed.
Absolutely no judgement from me. If you do decide to continue I can tell you that a child with DS will more than make up for the heartbreak you are feeling now, whatever their needs, as you’ll fall in love with your child whatever.
It is the life circumstances that is the hard bit. ❤️

This is only a decision you can make. But please consider that termination or keeping the baby are not the only choices. I have adopted two children with Down Syndrome. There are many people out there who would be happy to adopt a child with additional needs, especially if a planned adoption is in place before birth.

I think the people saying that you already know what you will choose because the took all the tests are wrong. I had every test I was offered when I was pregnant, thankfully all were clear, but if they hadn’t have been that doesn’t mean my mind was made up. I have no idea what I would do in that situation but I do believe in preparing for what’s to come.

I knew a couple who had extra tests due to their child having a limb abnormality. They had the initial diagnostic and then further tests after. They were offered an abortion but refused.

only you can make the decision. There is no right answer just the one you feel is best and I send all my best wishes x

What a nasty, nasty comment @Nearly50omg. Did typing it out make you feel good?

I had a Downs Syndrome baby who was born entirely healthy but died of an unrelated illness as a young child.
I was told a I was high risk for Downs with my first born but chose not to carry out any intrusive tests as I was adamant that it didn’t matter.
To be honest, the reality of having a Down’s syndrome baby was far harder than I realised.
The medical profession carried out so many tests and interventions from birth onwards that I felt he belonged to them more than me. He was taken from me and kept in neo natal for 3 weeks and I subsequently found it hard to bond. This was accentuated by the fact that he was very slow to smile and recognise me.
I was told I couldn’t breast feed as “Downs babies can’t” even though I felt he could. The medical professional knew more than me and I had to do what they said, even if it meant over riding my instincts as a mother.
Our house was constantly visited by health professionals (physios, health visitors, neo natal nurses) which felt intrusive.
He was fed 6 times a day through a tube, which took an hour each time.
it was exhausting and I was very depressed.
His passing was the worst thing that ever happened to me, but now I see it as possibly a blessing in disguise.
I’m sure I’ll be slated for saying so.

Just to build on this, you also need to consider what happens after you're in your 60s and you enter your twilight years. Realistically most adult children with DS still need a lot of care and support and parents are often heavily involved even if they are living 'independently'. You may well be elderly and still feel some responsibility to care for your child and potentially also face the very real reality that your vulnerable child out lives you.

Another thing to factor into your decision is the possibility of early onset dementia and other conditions that loom large for older people with DS. This is never given the same coverage as the cute DS baby or child but again it is a reality of many with DS.

My uncle has DS so does my cousin. It's been hard. My uncle has early onset dementia and can be violent. My cousin is only young so the outcomes aren't known. When I had my dc I wasn't tested as I thought I'd cope if they had DS. Now I'm older I can't imagine spending the next 40 years with caring responsibilities. It's the constant fighting for support. My grandmother looked after my uncle until her death at 88. She never had a break. Social services were as useful as a chocolate teapot.

I don’t think there’s an answer you’ll ever feel 100% comfortable with. My 3 kids have ALL got muscular dystrophy and Autism, 1 has ADHD too. Autism, the one we had no idea was a genetic risk for us is the most disabling for them (they were diagnosed at 17, 15 and 9 so when we had our 3rd we still didn’t know it was in the family) What I’m trying to say (badly) is you could try and try for a healthy child and then they could end up with something like autism and non verbal with high support needs anyway. There’s never ever any guarantees. I think you’re doing the right thing though researching. Join support groups etc

You use your age as a negative but have you thought of the positives? I had my first when we were both 21, we were still finding out who we were, getting ourselves together financially and building a home. That time was pretty uncertain. Now 20 some years later we are confident who we are, stable and more patient for it. You don’t know what’s going to happen to your child when you’re gone but nobody does, life is not guaranteed for anyone. You could be leaving a happy independent 40 year old with Down’s syndrome or you could be leaving a healthy 3 year old which is the risk we all take.

I know a little girl with down’s syndrome she’s the happiest, friendliest little diva around. Always a smile on her face. She’s like a little celebrity. I’m not saying things are perfect for her but she’s not dragged down by “normal” kid things like peer pressure. She’s unapologetically her.

What I would say is make sure it’s both your decisions, don’t let anyone else push you into it. You will be living with guilt which ever way you go, so just make sure it’s the guilt you can live with and be kind to yourselves, non of this is your fault.

Not by me. Thank you for so eloquently writing about your son's short life and the challenges you both had. I'm so sorry he was so poorly.

So sorry this has happened. Its a hard decision. My son and DIL had to terminate a much longed for son as a scan showed Potters syndrome. The choice was go to term and he would live maybe 24hrs or terminate but there were risks for mums life in carrying on. If there had been any chance of survival they would have gone on.
You have an awful choice to make and not a good age to do it. Good luck with whatever you decide

Hi OP, such a hard position to be in, damned if you do and damned if you don’t!
Probably a bit outing but here I go!
I have a child with very complex needs, non-verbal, epilepsy, in a wheelchair, fed by tube etc. all sounds horrendous but she’s a very happy child and relatively healthy in her own way aged 12 now.She has a very rare genetic condition that would not be routinely tested for.
However had I had a test up front to know the difficulties she was going to have I would definitely have terminated at that point in my life. I thought I would never have coped with a child and life like this, I had no experience with SEN at all, none. I’ve had to give up my professional medical career and completely change my outlook on life, and at times it’s been very hard and taken me and my husband to the very brink. But saying that I now am a SEND advocate, run various support groups and started up and now run an education farm for children with SEN as my job. It has completely and fundamentally changed by whole life but I wouldn’t swap my life now however hard it can be sometimes, I’m actually a much nicer person and have learnt and grown so much. Whatever you decide you will cope with it and it maybe the best thing you ever did!
Hopefully that helps a little, at least with Downs Syndrome, it’s quite common and you know somewhat what you’re getting yourself into. Do some research, have some genetic counselling and whatever you decide, good luck xx

I don’t think there is any right or wrong here OP. If you keep the baby, you will love him or her and find strength you didn’t know you had to give them the best life you can.
But that doesn’t mean terminating the pregnancy would have been been the wrong decision. They might face a very difficult life, with learning difficulties and health problems and this may put incredible strain on you and your relationship. And you are right, the chances of living an independent life are not the best and you will be older parents who might not be around when he or she is in their thirties and forties and needing you more than a non disabled child might.
Only you can decide but I think this one where you might have to trust your gut as much as reasoning.

That’s heartbreaking. I’m so sorry.

I havent read the whole thread, so sorry if I’m repeating anything.

I would certainly terminate in your position, but it’s completely personal. I had a high risk of downs with my second child and I was struggling to decide whether to have amnio. I needed somebody to tell me what to do, tbh.

the consultant asked me ‘if you terminated, would you get over it?’ My answer was ‘probably, eventually.’ Then he asked ‘if you had a child with DS, would you get over it?’ And I immediately replied ‘never.’ And that made my decision .

As a mum, I do fortunately have two healthy children, but even despite this I often worry who will protect them when I’m no longer here. If I had a child with a disability, I think this thought would tear me apart for the rest of my life. That’s not something you feel until after you meet your baby, in my experience.

Im sorry you’re in this position and wish you well, whatever you choose.

My son was born with Down syndrome 17 yrs ago this month. He is the best thing that ever happened to me. He is the funniest person who wants to love everyone. If you wou like to learn more about the condition and meet many families in your situation check out the FB group Future of Downs. We will welcome you to our amazing family

I really think you're in the minority; it is notoriously difficult for disabled children to get adopted. It would be much, much more likely this approach would be dooming a child to the trauma of separation from their family and a childhood bouncing around the terrible care system. I imagine OP and her husband would also be traumatised for life.

I can only assume you have particularly strong religious pro life views, which probably don't apply to this post.

ARC are not a good source of balanced/informative information. They're an awful, pro-termination, organisation & nothing they say is balanced.

Only you know what is right for you.

I have an 11 year old with DS. She's awesome.

I work in SEN & I can honestly say I find myself lucky that my child only has Down syndrome. The children I work with have many complex & varied needs, most of which wouldn't have been picked up with antenatal testing.

If you're not willing and able to raise a child with additional needs then you probably should question whether you want a child at all because there's absolutely no guarantees.

Another recommendation for ARC https://www.arc-uk.org

They helped me when I was in a similar position. We also had private blood tests done which can confirm more accurately what the scans tell you.

So sorry you’re in this position. There is no feeling like it, but whatever you decide will be right for you and your family.

It is much more difficult for older disabled children who have experienced trauma and abuse to be adopted. I do not generally disagree with that. But there are many adoptive parents who are willing to take on children with Down Syndrome as there is generally a known developmental expectation (with some variation obviously). Children who have Down syndrome who have been relinquished rather than removed are more likely to have early permanence plans rather than spend years in the care system, especially if the plan for adoption is established pre birth. Should they wish birth parents are able to have ongoing contact either directly or indirectly.

As for my pro life views, I believe everyone has a right to make their own decision with their own information. However, I do believe that it isn’t a binary decision of keep or terminate and it is important that that information is also given to parents before a decision is made.

I had my son at 44. He was a donor egg baby. He's 11 now and being a mum is hard work! I had 5 rounds of IVF and although I can't say for sure what I would have done, my plan would have been to sadly have a termination if I'd had a positive DS result. It must be so very difficult for you. Sending lots of love x

And if it doesn't work out? If there's no one to take a (potentially poorly) baby with Downs? Bit of a high risk strategy.