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?

I agree. Especiallly with a condition like DS which can have such wide ranging variables both in intellectual capacity and general health. I have taught three DS children in my time. One was non verbal, very limited in how he responded to other people, had poor gross and fine motor skills, needed help with personal care and feeding, struggled with any formal learning processes, and even with good suppport he really couldn’t cope with mainstream school either socially or academically and eventually went to a special school where he was much happier.

The others were very different, good verbal communication ( one spoke both English and Polish ), responsive, one could read and write at about the level of an eight or nine year old, they both loved school (mainstream) and were fully integrated, admittedly with support, and took part in extra curricular clubs and activities.

I'm so sorry you're having to go through this OP. I agree with other pps - there is no right answer, just what feels the right choice for you now. I faced the same situation twice in my early forties folllowing other miscarriages and it was one of the hardest periods of my life. My situation differed from yours in that I already had children, alongside other caring responsibilities in my wider family, so my decision had to take into account the effect it would have on them and the care I was able to give them if my baby was born with severe disabilities. Unfortunately there are no tests that can ascertain the level of disability the child with DS will face and my research at the time (3 horrific sleepness nights of internet searching before the deadline I was given by the hospital for the procedure passed) indicated that the media image of those with DS shows only those who are mildly affected and there are some who face very difficult lives. I felt in my case I could not make a choice that not only might involve a life of hardship for my baby with DS, but could be detrimental to the lives of so many other people I love. Choosing termination was the hardest decision I have ever made and my grief over the loss was awful, but I am at peace with it now and I know it was the right choice for me and those around me. In your case, it's really how capable you feel of taking the risk of having a child with severe disabilities. There are many people with mild DS living happy and fulfilled lives - for us the risk of that not being the case was too much, but that may be different for you. I'm not sure what I would have decided if I had not had other young children/ had a wider support network for other vulnerable relatives etc. Wishing you all the best with your decision - be gentle with yourself; it doesn't get much harder than this x

Agree with this. I had my baby at 44, no tests.
It was an unusual decision, but not questioned.

Most women have tests, hoping for the best.
These are your results. This may be your only.

I am so very sorry you have had to make this hard decision @Gingerseal .

I teach children with DS in the UK. Services are horrendous. Fighting for the necessary support is exhausting and never ending . I love the children that I teach but please be aware of the reality that faces you.

yeah, it's a tough one.

by the sound of things the child wouldn't have any siblings, which is possibly good in terms of not e.g. having less time to parent the others and so on.

your age is a little troubling, if the child lives to age 60+, a really significant proportion of their life will be lived without one or both of their parents.

regarding the severity of the disability, the best case scenario isn't too bad at all, but the worst case is.

a lot might come down to the temperament of the couple, including how much time and energy etc they have.

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. You need to have been thinking about these possibilities for a child without additional needs, not just for one with. So, it doesn't really matter whether they have additional needs or not - Children are a massive lifestyle change.

I have friends with children whom have downsyndrome - They are beautiful, loving, funny, full of character, sassy, and live a fantastic quality of life in mainstream schools where they are assisted to thrive. The LA assist them so the parents can have a break, they go on day trips, special parties etc...it's not as daunting as you might think it will be.

It's a massive shock, there are the added disabilities, all kinds of anxieties and chaotic thoughts that will come with this news. However, you don't have to let these thoughts control you.

Whatever choice you make will be the right one for you.

I do highly advise you look at the Facebook page "Fresh As Daisy" - It's the journey of a single Mum and her daughter Daisy. Daisy has Downsyndrome, but her Mum is also an additional needs therapist/speech&language. Daisy will have you crying-laughing.

She said she had a CVS test, so it's a test of the placenta. This is diagnostic for trisomy 21.

I have a son with Downs, he is grown up now. It was a shock because we weren't forwarned, and didn't know until he was born. I worked in special needs with adults and children so had a good idea. He has grown up with our other children and they adore him. He had a minor heart operation and never any other issues. I know several people with Downs, they have rich and fulfilling lives. Obviously all are different but I would advise going and talking to the head of a specialist school. I found the doctors very negative, but realised that they only see the most challenging medical cases, not the ones like our son who just lives his life. The headteacher was much more informative.
I had an amniocentesis, for my next son but would not have terminated. Just for info.
I'm so sorry you're in this position, it's very hard for you. I can only tell you my experience. My son was not always easy but my others weren't either. They are all individuals and living their best lives. His is just different.
My husband adores him too, he has brought something special to our family. But only you can decide if it would be the right thing for you.
With regard to later life, he is living in a wonderful residential home with his own friends and activities and he stays with us regularly and holidays with us. Our social worker has been marvellous and the other children also see him regularly, so no concern for the future either.
I hope this helps, happy to answer any questions.

Such a hard decision especially as there is no crystal ball as to what the future holds and how much your child would be affected. I guess one thing to consider is what if you have a termination and ivf doesn’t work again? Which is a possibility? Hopefully it would but it’s something I’d factor into my decision. Best of luck whatever you decide.

I’m so sorry you’re in this position OP. I had a TFMR 6 years ago following a confirmed DS diagnosis. I still feel sadness about it and probably always will but I don’t regret the decision. My DH and I did not feel equipped to parent a disabled child, and I did not want my older son to be burdened with caring for his sibling in later life. There is a boy with DS in my son’s class now and he is delightful but I know it has been a very hard road for his parents. They have been waiting for a special school place for him for over 4 years.

For me the decision would be based on what happens after you are gone. The child could well be alone from aged 30ish. I couldn’t allow that tbh.

Gosh it is the ultimate dilemma. I really wish you all the best and I’m sure we all think we think we know what we would do in this circumstance but then it’s different when faced with it.

personally with a heavy heart I would terminate. My reasons being, I have older children and ultimately they will, in some way, have responsibility for a degree of care for the child. i don’t think that is fair on them. It is unavoidable as is as the parents age. Secondly the stress of worrying about that would happen to the child once we are gone would weigh on me so heavily I am not sure I could live a full life. It isn’t that I wouldn’t love and care for the child in my lifetime but I just couldn’t bare the thought of the what ifs afterward.

everyone is different though and I totally respect those who choose to continue. There is no right or wrong. X

Being a parent to a typical child is not equally aa hard work as being a parent t9 a child with disabilities, i have one of each and beleive me there is a world of difference, whilst I live both my sons equally it is so much easier being a parent to a child without disabilities
Both my children bring me huge amounts of joy but it's really not the same.

As others have said, whatever you decide will be the right decision for you. My last baby was 25 years ago so I couldn’t, with hand on heart, say what I would have done back then. Good luck to you and your husband in whatever choice you make.

That's not inevitable,my older son will not be his brothers carer ,he has his own life to lead.

What a horribly difficult decision to make.

Lots of factors will.come into play such as how desperately you want a child. Given your age, this may be your only chance. Also, do you have a supportive family around you? Are you financially secure in case one of you has to give up work? There can be a lot of hospital appointments and hospital stays that impact hugely on your life.

I know 2 families with a DS child. Family one had IVF, are older parents and spent years trying for a baby so it was never an option to terminate. Mum is fantastic. Was told her child wouldn't be able to do this or that but child has exceeded all development expectations. This is largely because the DS is mild, parents are fully involved in the DS community, have educated themselves about everything and mum has given up work to care for her child 100% of the time.

Family two have a DS child who has a more severe form of DS. Child is unable to talk or walk very far. Has to attend a SEND school as mainstream school unable to support child's needs. Child has lots of other health issues, is very overweight and has behavioural issues. Child will be unlikely to lead an independent life. Parents again are fantastic and wouldn't have chosen to terminate the pregnancy but admit that life can be very hard.

I think the decision to terminate is made more difficult because of the differing levels of DS. Agree that what we see on TV and in the media is all DS children and adults living fulfilling and happy lives and not the more extreme cases. When I was pregnant I recall my DH adamant that he didn't want a DS child if the test came back positive and that really hurt me and made me look at him differently.

Good luck with your decision. It's good that you are doing your research. Do try and speak with families of DS children so you can make a balanced decision.

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. You need to have been thinking about these possibilities for a child without additional needs, not just for one with. So, it doesn't really matter whether they have additional needs or not - Children are a massive lifestyle change.

I don't see how you can say these scenarios are 'equally hard work'. And of course it matters or else OP would not be having to make this agonising decision.

I'm in my 60s with a sister 5 years younger than me who has Down Syndrome. She was cared for and very much loved by my mother and by me and my 2 older siblings.

She has had a healthy life although she now has early onset dementia. She lived with my mother until she was in her 20s and then moved to a local authority funded home. She was relatively high functioning. She could spell as well as I can and at one time could name the countries around the coast of Africa with their capital cities; at the same time, if you asked her to add 2 and 2, she couldn't do it.

She has had a happy life and has felt loved and cared for; she has been very social but she has had no significant romantic relationship - and she has missed having that. I think that life as a child had its challenges but, in some ways, childhood is the easy bit. She was the youngest in the family and she just seemed 'stuck' in childhood.

As an adult the problems get harder: where should she live, how do you cope as she gets physically bigger and faces greater discrimination and social stigma. You'll have to deal with trying to find care for her/him as you get older and how will s/he manage when you are no longer around to care for her/him

Feel free to dm me if I can be of any use to you

Not as daunting?

one of my kids has ADHD which is peanuts comparing to Downs and it’s unbelievably hard work

not just for me but for him too. The challenges of every day life are shocking and this is not daunting ??

.

My very close friend has a wonderful daughter with DS and is now expecting her third child (her baby with DS is her eldest). Her daughter does OT/PT and SLT and met her milestones delayed but each one was celebrated. I knew going in to pregnancy I wouldn’t terminate for DS, especially knowing my friends child. One of my children actually has a different genetic issue that wasn’t picked up until after birth and so I knew any subsequent pregnancy would come with risks, several of my friends/people I know have children with different conditions. One has a 43yr old daughter with DS who works in a bakery as a waitress and lives in her own living quarters attached to her parents home. I knew going in to pregnancy DS would not be a reason for me to terminate. Nobody can tell you what to do I guess.

He has mosaic Down’s Syndrome which is well documented hence finding out specifically what it means for your circumstances before you make as an informed decision as possible.

Of course it doesn’t mean his carer necessarily but if the child has extra needs and I am no longer around, it will fall to siblings to take over responsibility their care. Who else will do it ultimately? I am sure many will do it without question as they love their sibling but personally I would chose not to do that if I could.

I would terminate. It’s hard enough having a child who doesn’t have a disability but this is a tough one. DS is on a big spectrum meaning your child may be able to work, even marry, but could also be 100% reliant on care forever. If you have another child, would they be expected to care for their sibling? If you don’t have another child, would they have to go into care when you die?

Sorry you’re going through this 🥰 🥰