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?

Well yes as I said in an earlier quote it hard to know how you would feel in this circumstance

however, My DH and I had this discussion at the time we had to the tests done for my second pregnancy and, whilst they came back clear, we had decided that we would terminate if they hadn’t for the reasons I have outlined. There is absolutely no right or wrong in this situation and I absolutely wouldn’t judge anyone for making the decision either way.

My Dad is in his late 50's. His older sister has a severe disability and co-existing MH issues. My grandparents are very elderly/frail and are consequently unable to oversee her care and have made inadequate provisions in advance for her later life. My Dad spends his life running around after his sister who is living in supported accommodation, paying for everything and ferrying her to appointments.

If my dad wasn't around, I have no idea who would be around to advocate for her and I can imagine she would have a miserable, solitary existence in supported living. Caring for my aunt is absolutely not my dad's responsibility but it is not within his conscience to wash his hands of her and leave her in state funded accommodation with no family members acting in her best interest. Think about how the future would look for this child in their later years if you decide to proceed with the pregnancy.

If you want a child that embodies love, life and everything joyful then continue. There are 4 different expressions of downs, some more profound than others. It's a decision you have to make in an informed way but decide with your heart. It's not inevitable that you'll abort because the test was positive. Don't feel pressured by that. Meet some of of the downs communities and try to get a feel for life with downs in your life. I've known some remarkable people with downs I'd certainly recommend with my whole heart. I feel for you OP it's a tough decision, just remember there'll be support for you, don't be afraid of embracing joy.

Reach out to Down Syndrome UK/Positive about Down Syndrome. They can put you in touch with parents who have been through this. All parents of children with disabilities worry about what will happen after they pass on - most set up trusts and appoint guardians. What I can tell you is that once your child is born you will stop seeing the disability and start seeing the child, your child, and you will love them completely. And to think of it another way, 80 per cent of disabilities are acquired later in life (ie after birth) and you wouldn't hesitate to lean into a post-birth/childhood, or later acquired, disability. Your child with Down Syndrome will master walking, reading, writing and potty training like all the other children, albeit in their own time. Your child will adore you like any other child. Start there.

I would terminate. I have worked with a child with Down’s and although we had a very positive and warm relationship, she was hard work (as well as being funny, intuitive and kind!). The trauma of one day at school when she managed to escape will stay with me for life - it was easily the worst experience of my whole working life. She was in mainstream and although the teachers and other children were lovely towards her, she WAS isolated because she can’t do or learn everything that they do. When I left the school, she still wasn’t fully toilet trained and that was in upper primary. And I remember her parent telling me that Down’s children are at so much more risk of being sexually abused. So, no, I personally couldn’t live with the worry or relentlessness of it all.
I’m so sorry if that sounds mean-spirited; I’m just trying to be honest.
Best of luck to you x

There isnt a right or wrong answer. Personally I wouldn’t go ahead…. For the reasons you mention in your Op. It must feel like and impossible choice and I don’t envy you at all having to make it.

Op, I’m so sorry - I have been in your position.

At age 37 I fell pregnant naturally after 3 rounds of IVF and 3 miscarriages. Early scans all great and then we found out from an NIPT (and CVS) our son had T21.

We spent c3 weeks researching things - speaking to ARC, the Downs Syndrome Association, looking into our local support, I asked for parents’ experiences on here who had children with T21 and I read “Don’t be Sorry” and “For the love of Oscar”.

Ultimately, we couldn’t face the prospect that our only child would end up on his own when we were too old to care for him or once we’d gone. We decided to TFMR and I gave birth to our baby boy at 16 weeks.

It’s the hardest experience of my life and I needed counselling afterwards. I still struggle with guilt but I know it was the right decision for us.

Only you will know what the right decision is for you and your family. I’d caution against comments from people who have not been in the position as ultimately no one knows what they would do until they find themselves in such an awful position.

Please PM me if I can be of any help.

My Daughter about your age , has a beautiful little girl with Downs
Syndrome, she is delightful , full of joy and mischief , two years of
age and does most things expected of a two year old. Read as much
as you can there is so much help out there for you and your Husband,
it’s a shock I know at first but once you accept baby has Down’s syndrome
you can start to plan, try not to think too far into the future, I’m sending love
to you and pray you come to the right decision , whatever is right
for you , don’t be nervous and afraid all will be well .

Only read OP's posts and a couple of others.

I took the tests. This was not because I already knew what I would do in certain situations, but because I did not know what I would do until faced with it. It's one thing to consider your options but entirely different when you are actually faced with the reality.

I have a good friend with a DD with Down's in her late teens. As the worlds of our peers open up due to our teenagers becoming more independent I think she and her husband feel the impact more. She is an amazing kid and may go on to live in some sort of supported housing, but that's a long way off.

Hi OP,

I have a 6 year old with DS. He's our absolute world. He is clever, can speak 2 languages, can read and is reaching all educational milestones for his age. He is incredibly funny and charms everyone he meets.

He is very physically able and does gymnastics.

He was born with 2 holes in his heart that were fixed at 3 months old and apart from his surgery scar, you'd never have known now as he's so active and full of energy. We are apart of a large charity called Positive About Down Syndrome, they have an expectant parents group on Facebook and an excellent website, please do look them up. 50% of babies with DS have a heart condition, but most of these are fixed extremely easily these days with the medical advances we have now.

I will also point out that older adults with DS these days may have never accessed a full education and definitely weren't born into a world with the medical advances we have now, so they are not a great marker for what to expect in adulthood of a child with DS born today.

There are 3 types of Down Syndrome: Trisomy 21, Translocational Down Syndrome and Mosaic Down Syndrome. 95% of people with DS have T21, 3% have TDS and 2% have MDS.

After having my son, I had genetic testing which revealed I actually have Mosaic Down Syndrome myself. I was late to talk and had some social differences growing up, school said I was a bit 'slow' 🙄. However, I went onto get my GCSEs, 4 A levels, a BA, an MA and a PGCE.

Down syndrome is not a spectrum like autism. There are different types, but what causes the differences in people with T21 is co occurring conditions (like autism, adhd, hearing loss, sight issues, thyroid conditions) and just different personalities. Also, early intervention is key. I know some teenagers whose parents didn't get the best advise re early intervention and have had to work a lot harder with speech and education. The parents I know who have had great support (through the charity PADS I mentioned above), have children who are really thriving developmentally.

It's a hard decision to make, I had an amnio when I was pregnant with my DS, but so glad we chose to keep him. He's everything we ever wanted in a child.

Nonsense, link one place where he has said he has it. Stop getting your information from people posting on X or facebook or who get their information from there.

OP if you terminate this pregnancy are you going to try again? You're unfortunately only getting older and at 45 the chance of a child with DS is around 1 in 30 if you do fall pregnant again. I think in those circumstances I'd go through with the pregnancy. My DS is autistic and I wouldn't change him for the world, not one regret. At the time I was pregnant though (29) if I'd known he was going to be autistic and had the option to terminate then I may well have done - because he could have been far more severely affected and life could have been extremely difficult. Not knowing how severely your child will be affected makes the decision so much harder. I'm sorry you're going through this.

I am another who disagrees that the decision to test equates to having already decided on termination.
Testing is available to enable more informed decision making and forward planning. That applies to both options.
I also disagree with the first poster who said both answers are wrong. We all have moments of 'ifs and buts' throughout our lives. So getting support and doing research are vital in the process of decision-making. Whatever you decide to do, you will know it was a decision made after careful consideration and the individual factors for you tipped the balance to your ultimate decision. The fact you may have moments of sadness in the future doesn't make a decision wrong.

So sorry OP, this sounds like an impossibly hard decision x

Both paths are ‘right’ and both are ‘wrong’ so I will answer based on my own opinion.

If I found myself pregnant now in the same position (I’m 40) I would end the pregnancy. However I have 1 child already and I have never found motherhood easy.
If I had no children , at 43, I would be more likely to keep the pregnancy, as it may be your last chance for your own biological child, and the alternative is coming to terms with the fact you may not become a mum.
It seems you’ll need to decide which decision you can live with more.

Sending you love, my heart goes out to you xx

No one can really advise you what to do but whatever you truly feel deep in your heart is what’s right for you - no one else’s view matters.
i have worked with people who have Downs, some are lovely, happy people who are almost independent and some are grumpy, difficult, miserable individuals.
Like all people really, a healthy, happy, bright child is never guaranteed.
Good luck though in whatever you do. 💐💐

I don’t think it’s necessarily a deal breaker for OP. That’s not what l took from her post. I think because of the difficulty in conceiving and the fact that the risk of downs increases with the age of the mother, OP may have wanted to be prepared. Knowledge is power and l think the fact that OP has her diagnosis and is still researching the condition, suggests she wants to be as informed as possible before making what will be a very difficult decision either way.

I haven't read all the replies, just yours OP.
My 1st pregnancy, after 4yr TTC, had patau syndrome. This was far more clear cut than DS because there isn't the degree of spectrum of abilities.
I chose TFMR and they advised medical management- which is what I had.

Remember that this isn't your fault and you are not alone. If you have any questions, please feel free to reach out on the chat or PM if you prefer. ❤️

I don’t think I would terminate. We were faced with a similar decision where we hoped for T21 but my daughter was diagnosed with T18 (Edwards’ syndrome) at 21 weeks gestation

We continued the pregnancy and fought for her. I think for T18 the decision is borderline, the balance between quality of life and death so much closer but few people with Down syndrome have such poor quality of life that it would be better if they had never been born.

The weighing up is therefore much more about whether as parents you can and want to parent a child with special needs which may be significant. How much this would impact on your life and what long term plans there would be in place for your child. Apparently more potential parents terminate T21 pregnancies than T18 or T13 pregnancies probably because with the latter the chance you will outlive your child are low

For those who think you wouldn’t test if you didn’t want to terminate, testing enables you to plan for your child from the first moment, to birth in the right location, fight for the best treatment. Not testing is really for those who want nature to take its course, who would make no proactive decisions, who wish neither to terminate nor to intervene to prolong life.

I agree with pps suggesting talking to people with adult children with DS if you can. If there is support it’s useless according to the people I know. It’s very difficult to do things like get a job, for those who are capable of living semi-independent lives. Often parents are still very involved with their children when they are 20s/30s/40s. The people with DS I’m acquainted with are wonderful people, well-liked and contribute so much to their families and settings but at the same time negotiating all the systems is never-ending.

So sorry that you are in this position. Having a child is life and marriage changing, having a child with DS all the more so. How did you imagine your life progressing? If either of you have career/life ambitions beyond children then my advice is do not be afraid to be selfish.

I have an adult cousin with DS who is now in her mid-40s. Everyone's stories are highly individual, but I'll share my family's.

My aunt and uncle's lives were indescribably hard when my cousin was a child mainly because of a failure to diagnose a co-morbidity - and later, to accept that diagnosis on the part of my uncle and the treatment that went with it. This meant that she did not get required medication for her schizophrenia as early as she should have. She has other issues too, which she is now medicated for. Prior to this, her behaviour was very hard to control.

For the past at least two decades she has lived in a group home, which has worked out well. She used to have a job and enjoys social activities. She absolutely is content with her lifestyle.

My aunt and uncle now have significant health problems. Their other son has had issues with addiction but is now in a good place - I think they feel confident now he will be able to act as an advocate for her if something happens to them, but this is not guaranteed. There is no one else who could take his place though - I live thousands of miles away abroad, for example, and she doesn't know meat all now or her other cousins who are also not local. I would give thought to caregivers, in the worst case scenario.

Bearing in mind this is over thirty years ago now, what was interesting is that health professionals seemed to attribute all of my cousin's issues to the DS. That was not the case at all and did start to change over the years but I'd want to be confident of the health care /awareness of the condition was continuing to evolve and what kind of support you could access. My aunt was desolate, my uncle was not well-engaged. Is your partner supportive? And yes, it negatively affected their marriage. They are still together but it was a hard road and it's also probably a bit 'generational' - they are early Boomers, lives long intertwined, married out of a habit perhaps which is less of a thing today maybe? They're also well off.

It's been a very hard road but it's difficult to say what was them, the 'system' for much of her early life, and my cousin's particular disability mix.

Good luck and hugs.

I've worked with Downs children in different settings. Many of them were absolutely delightful, had wonderful parents and happy lives. However, as another poster said on here, looking after a disabled child is a full time job. You never get all the support you need and have to fight for everything education, benefits, housing in later life etc etc. However much joy you might get from your child, your life would be very different from the way it is now. There are lots of rewards but also lots of struggles and battles. It really depends on how resilient you are as a person ss to how well you'd cope. Sorry you are in this position.

Having grown up, with a sibling with a Down’s syndrome, I would 100% terminate (and have done amino to check). The issue is not when they are kids (although that’s challenging too), but when they become adults - this country has zero provision for adults with disabilities such as day centers, activities, employment etc. Who will look after them when you are gone? Would that provision be adequate and something you’d be happy with? Your life will completely change with no end in sight - like normal milestones you have with children when they grow up.

No parent knows how their child will turn out. I have a child with multiple neurodivergent conditions and a sibling with Downs Syndrome. My sibling lives a good, semi-independent life (has a job, but probably won't live alone). My child is not severely impacted, but has a cousin who has autism that impacts their life much more. All diagnoses with different outcomes. Two could not have been detected before birth. I know parents who are dealing with children with anorexia, with depression and suicidal ideation. Kids can turn out to have other health issues, addiction, become criminals. I don't say this to be all doom and gloom, just that no parent knows the child they'll get. Being a SEN parent is tough, no doubt, you have to be persistent and you may have to revise your ideas of how things will turn out - one of you may turn down the career aspirations, you may not have the family experiences you dreamed of. But all that could have happened anyway without this diagnosis. That's my long way of saying, this child will bring you joy and tears, but all do. This child will not bring you down the road you planned, but many children forge a different path. You have the benefit of knowing something about your child in advance, but you don't know everything. I wish you luck with your decision.

You should keep somethings to yourself. These people need real expertise and it would be kinder to direct them to it rather than fill their hearts with anecdotal gossip. Plus, you say you worked education so you will know you should not be divulging those facts about your ex student.

I'm so sorry you are in this position, it is a very difficult decision to make. I have been in your position and chose not to continue with the pregnancy. It was a very traumatic and distressing time but was the right decision for us to make. Please feel free to message me directly if you have any questions. Also I'm not sure whether it is of interest but I chose not to have any tests for my next pregnancy.