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'm so sorry you find yourself in this situation. Its not easy and there's no right or wrong answer.
I lost my little boy who had Trisomy 13 and sadly he died at birth due to his condition, and I work with other parents now who get the same diagnosis. I often speak to parents who aren't sure what they want to do whether to terminate or keep going with the pregnancy. I know it's not T21 and the reality of the condition is a bit different.
The advice I give them is that in life you have regrets and you have things that you knew were right even if you didn't like them. Take your time as there is no rush here and you want to move forward knowing you have no regrets whatever you choose to do.
The reality is maybe someone says 'I'd terminate' and another says 'I'd keep them' but those people aren't you and whatever you choose it has to be right for you.
Whatever you choose, give yourself time and space and kindness and dont be afraid to get yourself signed off work. I remember my bereavement midwife told me 'you don't get this time back' and her words felt a bit harsh at the time but she was 100% right.
If you want a wee chat please feel free to drop me a message.
Sending you a massive hug ❤️

I have autistic children but have worked with young people and adults with various SEN / disabilities.

No two people with Down Syndrome are the same, and, as others have said, many live rich and independent lives. Even though people with Down Syndrome are all different, nearly all of them will have some form of Learning Disability/ Intellectual Disability. Many people with Down Syndrome will have some health issues (although not always serious) and some will also be autistic.

I will say that there is generally quite a lot of understanding of Down Syndrome and usually lots of support and advocacy groups. It's really common for children with Down Syndrome to go to mainstream primary school and then specialist secondary school.

As other posters have said, you could get no warning and have a child with severe disabilities (like I did, twice) and extremely challenging behaviour. It's all a chance game.

I think you have to make your own decision and no one should blame you whatever you decide.

Some poster on another thread was agog that an actually intelligent woman chose a 'job' as opposed to uni and a career to be a mother. The poster literally struggled to understand that the woman in question was actually a decent human being with an ounce of intelligence and assumed she must be a chav because she wanted children young and didn't want the stress of a career on top of that. It was like talking to an alien from out of space. The elitist snobbery on anyone that has children younger and the assumptions about their lives is astounding. Then comes the 'throw in the towel ' jealousy accusations. 'well I assume you're bitter as you haven't travelled?' a.) the poster had travelled (including shock horror with kids) and b.) second shock horror: not everyone wants to travel extensively. I honestly think Mumsnet 40+ parenting brigade are the most blinkered people

No, she shouldn't keep her experience to herself. It's an anonymous forum, no identifying details, and it's relevant to the OP's question/concerns. Not to mention that EVERYONE's experience in life is anecdotal in some sense, and EVERYONE's experience in life is real experience in some sense.

My experience is similar to the person's you were criticising, except the DS child in question was an extended family member who was at the hard end of the spectrum, the end most people don't see on all the 'happy' sharing sites or news stories. The end of the spectrum where they will never live independently, will never be able to support themselves, the end where communication is incredibly difficult, the end where marriages broke down because one parent (child's dad) couldn't cope with the realities of it all, the end where the sibling in the house got little time and attention and resources and was terribly unhappy.

I had amniocentesis at 20 weeks as my levels were raised and I was told my son had spina bifida. I was told I should abort. I listened to my heart and I didn't feel the advice was right for me. Needless to say I didn't abort and delivered a healthy but huge baby boy at 10lb 90z! By caesarian section.

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

Same. I have a genetic disorder and I saw what raising us did to my mother!

To those posters who say “If you have prenatal testing you’ve already decided”, that’s just not the case. I know quite a few parents of kids with DS who had the tests and then went ahead with the pregnancy. They just wanted to be prepared.

On Mumsnet everything about life seems to be about career - I disagree. Look at the constant ongoing debates between SAHMs and those with careers. Both sides - all sides - get represented and people are free to share their views and make their own choices, which they will no matter what a mumsnet thread encourages. It's not a competition, no one here is making you 'new think' and you shouldn't feel so angry if you're happy with your decisions. I'll stop there as it's not on to derail this very specific and sensitive thread with this wider issue.

OP, I am sorry you are going though this. I have a friend who, like you, had IVF and had a ds baby. It was undiagnosed as she chose not to have screening. My friend has been the most amazing mum to her child over the years, but honestly she has found it really really hard. The child is "middle of the road" downs - no major health issues but no chance of starring in call the midwife. I think every year that goes by, the difference between her dc and other dc widens and it makes her so sad, despite / because of loving her dc so much.
She wasn't able to have more children. I have another friend who had a ds child then several 'normal' children, and I think that was much easier for her to deal with psychologically.
I think you need to think of this as your last chance to have a biological child, then work out what choice would give you the most peace. If having a bio child is a must, then I would lean towards keeping it. If you are open to donor eggs / adoption / fostering then these are other ways to experience parenthood. If you do try IVF again, I would definitely get the embryos tested so you don't have to go through this pain again.

That poster was just being honest my sin has severe learning disabilities and autism
I myself don't feel the same as that poster but we are all different and have different perspectives
I'm sure she adore her son
It's hard having a child with disabilities.

I faced this dilemma 8 years ago and chose to termiate. It wasn't a decision made lightly as it was a much-wanted first pregnancy. Not only was it heartbreaking, but I suffered physical complications following the delivery and required surgery as I was still bleeding heavily two months on. I don't regret our decision though - my husband and I weren't in a positional mentally, practically or financially to give a Downs child the life they deserved. We went on to have a daughter who also has numerous disabilities but none that mean she won't be able to look after herself and thrive once we're gone.

My friend also found out she was expecitng a Downs baby. There was never any doubt in her mind that she would go ahead with the pregnancy. At the time she was an Early Years SEN teacher so in that sense perfectly equipped to meet the child's needs. Her son is now five and she has her hands full with him. He has numerous auto-immune diseases that individuals with Downs are more likely to develop such as Type 1 diabetes which require a lot of additional support. She hasn't been able to go back to work since his birth and can't ever envisage being able to return to her former demanding career. Fortuntely her husband is a high earner so they aren't struggling financially. If they're struggling in other ways, they haven't shared this. She too says she has no regrets.

Sorry, but all these posters saying to factor in whether this is your last chance to have a child - I don't think that should come into it at all. The decision should be selfless. I know it's tough, but surely that is what being a parent / prospective parent is all about? Putting your own wants and desires to one side and doing whatever is in the best interests of your child.

It may be selfish but it is just the reality.

If you weren’t here and there was an issue with that supported living facility, and they need a family member- that’s your other son.

If there’s no parents here to visit in the facility then every birthday, Christmas, weekend, that also falls on your other son.

Slightly older and facing health issues, family member needed, other son.

It’s hard for everyone but I truly do not think many people would be able to essentially forget about their disabled sibling and live their own lives knowing their help was needed.

I would consider at a very practical level one thing - what will happen once you are gone? If a child is unable to care for themselves, it can be incredibly hard for parents to tackle this question.

I feel for you OP, that's a very difficult situation. Wishing you all the best, whatever you decide.

My daughter, who will be 10 this month, had a postnatal diagnosis. She is absolutely wonderful with a wicked sense of humour. She’s just about to go into year 5 at mainstream school. Her diagnosis via a consultant with zero bedside manners was all doom and gloom - talk of heart and bowel issues, neither of which she has. Her speech and motor skills were delayed - started to walk a few steps just before 3, and would only put one or two words together until she was about 5. She was always a fabulous signer though and has steadily built up her vocabulary, partly through speech therapy, helping her turn into the little chatter box she is today. Yes, she can have her moments, be stubborn and frustrating, but I wouldn’t swap her for the world.

The Downs Syndrome Association (www.downs-syndrome.org.uk) and Downs Syndrome UK (www.downsyndromeuk.co.uk) both offer great information, resources and signposting to local support groups. If you’re on Facebook, do have a look at the Future of Downs group and Positive about Down Syndrome pages - both of which have sub groups for expectant parents. Good luck with whatever you decide

If you want a child that embodies love, life and everything joyful then continue

There are people on this thread who know/care for DS folk who cannot speak, hear, see or walk.

Children with DS have a wide range of abilities. No one can tell you what to do you have to go with your head and heart. I know 3 adults with DS. 2 go to work, have hobbies and friends and lead really nice lives. 1 still lives at home but is quite independent the second lives in supportive accommodation and is mostly independent. The third needs more parental support. He doesn't work but attends a day centre where he learns life skills. The hope being he will one day be able to live independently in supportive accommodation. I've known 2 of these adults from when they were DC and they were both loving DC who just were behind their peers. The girl used to ride a large tricycle and was always waving to people as she rode around. Both DC always seemed happy. One went to a daycare with my youngest DS he couldn't do all the things DS could do but he loved to play with the other DC. I think as it would be your only DC you'd have the capacity to care for them if you chose to do so. It would be a more difficult task if you had other DC to care for. This might be your only chance of having a DC. I know it's different but I have 2 DS's with ADHD and even if I'd have known how hard it would be before they were born I'd still have loved and wanted them. I know some parents couldn't cope with having a DC who had DS and would be behind other DC. None is right or wrong just what you feel are your thoughts on how you'd cope. There are support groups out there.

Completely agree. I have one child with SEN and another without SEN. There’s absolutely no comparison whatsoever in terms of the effort involved in parenting them.

Give it a chance

Yes! Hate, hate hate! There’s a much better IKEA analogy which I’ll see if I can dig out….

I think something as monumental as bringing new life into the world needs slightly more consideration than this. 🙄

I was born with spina bifida at a time when this type of testing wasn’t available. I remember when amniocentesis was introduced - early 1970s - and l actually asked my parents would they have had the test had it been available for them. They said they would have had the test. When l asked whether a positive result would have made a difference mum told me that they wouldn’t have considered termination because the test could only determine the presence of the condition, and not the severity. She would have used the information to research and it would have allowed them to be better prepared for what came next.

OP is clearly experiencing something similar and l think the posters who are saying she’s already decided are probably being guided by what they would do in the same situation - which they can’t possibly know unless they’ve experienced it themselves.

Surely you knew that leaving it till you were in your 40’s you were leaving yourself open to having children with disabilities? The human body isn’t meant to have children past a certain age and this is why you end up with this result unfortunately. I had my 2nd child at 35 and was told he had downs and I didn’t want any more tests or whatever I knew I would be having him after going through IVF and despite all the tests being positive he didn’t actually have anything at all!

you need to make the decision are you going to have a child and accept all that comes with them or not and if you aren’t having it then you need to accept you will probably have the same result if you carry on going through ivf.

Is this the most unhelpful, self congratulatory comment ever?

Was there really any need for this ? You did what was best for you, and OP is using the diagnosis to research what is best for both her and her baby. At best it’s unhelpful and at worst it’s just nasty.