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 have a child with very significant additional needs. I love them more than I ever dreamed possible. HOWEVER, if I had known in pregnancy what our life would look like now, I would not have continued with the pregnancy. It is so, so hard. The constant fight for everything. The difficulties that disability brings. The absolute bone crushing worry of what will happen to them after we die.

No flaming here.

Your post is very accurate: what is seen in the media is very different to the reality a lot of families face.

As someone who works with people with DS I would not terminate, but it is a personal decision. I know of someone who was told their child will have DS and then when born they did not so tests are not always 100% accurate either.

I have an 11-year-old with DS. She’s my only child and arrived when I was 42, after negative tests.
She also has autism and ADHD. She is fabulous and gorgeous and we adore her but she is hard work.
Our life feels very different from those of people whose children have “just DS”. If I could take away the autism I would, in a heartbeat. But I wouldn’t lose the DS. It’s so fundamental to who she is.
This is a rather confused way of saying that, knowing what I know now, I wouldn’t terminate a DS pregnancy, because most of the parents I know whose child has straightforward DS seem pretty happy.
But it’s absolutely your choice and no one can make it for you or judge you either way.

You have such a difficult decision to make and my heart goes out to you. Like someone else who has posted on here, I have worked in school with Down syndrome children and they have the most lovely lives. The children are just delightful - fun, loving, engaging and fit in with our class easily - they are also very popular with the other children. I’m speaking as a primary LSA. Good luck to you both, with whatever you decide. ❤️

I would terminate. There would be too many unknowns.

It’s impossible to know the best thing to do is though so you just have to make a decision and go with it. You can think about it and think about it but at some point you just have to decide. Hopefully you and your husband will agree with each other with whatever decision you come to.
Had you discussed what you might do in this situation in the past?
I know I would abort and, if it were me, I would be very confident I wouldn’t second guess myself or regret the decision but only you know how you think you will deal with it. If you are really struggling then you might find it helpful to talk to a professional or someone from one of the charities that are involved with these types of situations.

My 12 year old son has a condition similar to downs syndrome. He learnt to sit up aged 16 months, walked at 2.5 and wrote his name aged 8. He is happy in mainstream school and the teachers describe him as an absolute joy. He has lots of friends, a mixture of SEN and not and he is always very positive. We were given the option of termination after my 20 week scan but I'm so glad i didn't.

Whatever your decision, make your peace with it. It will be the right decision for you.

As well as hearing from people with children with DS it might be useful to talk to parents with adult children with DS.

I'm so sorry that you have this painful and difficult decision on your hands. I had a baby at 40 and had all the checks because I knew I would not continue with the pregnancy if I knew the baby had DS. I am a teacher of very young children and I see second-hand the struggles some families have. Of course I have also seen families who cope amazingly with disabilities - but it's still not easy. I know it was the right decision for us. Our baby was healthy and I still found early parenthood very tough. Was that our ages, our personalities? Who knows. Make an honest decision, either way. And best of luck xx

If you can face it read Welcome to Holland. ( poem Emily Peal Kingsley)

urghhh. As a parent of a SEN child, I hated that poem!

There’s no right or wrong answer, only you can decide what to do, and unfortunately no one can assure you that your child will or won’t have comorbidities or the flip side be able to be independent. I will assure you though that adults with down syndrome can live happy, semi independent lives in group housing with others also with down syndrome - I have several that volunteer with me! They have better social lives than me, all enjoy life to the full and have teams of dedicated carers funded by the local authority who provide 24/7 care. I also know of a young lady who lives fully independently and is at university in the USA. It is a spectrum so there are people with downs who have higher needs, one of my volunteers I know wasn’t an easy teenager and went to residential school from 12, but he is helpful, kind and a mean washer upper even if the water ends up on the floor

whatever you decide, I’ll be thinking of you, hardest decision to make only you can make it. I personally would request a fetal echocardiogram if possible to try to get a feeling for if there are heart defects, it’s a major comorbidity

Agree with this. We had testing to be informed and had no intention of not continuing with the pregnancy, all low risk yet our DD was diagnosed with a rare genetic condition when she was 2.5. Nothing in life is guaranteed, but I do believe knowledge is power.

Sadly no one can tell you what the right thing to do is as it’s so individual. This pp is so right about whether you’d rather have your baby or no baby though due to the timeline you are on.

Good luck OP, it’s such a difficult situation to be in.

This.

The poor elderly women you see dragging themselves along with a middle aged "child" in tow. It breaks my heart.

Ps the people I know are all in their 20’s so this is what life for them is like as an adult - one long holiday from where I’m looking, one of my volunteers even has a gig buddy to take home to concerts and club nights!

Only you and your DH can make this decision for yourselves. I would terminate and I wouldn't see it as 'ending a life', I don't think that's a helpful way to frame it.

@browniesforbreakfast our child development centre had 'Welcome to Holland' stencilled on the waiting room wall. I hate it too. I often find that parents without SN children find it heartwarming.

Only you can make that decision.

In many ways I am glad I opted out of the tests in pregnancy as I would have worried and I honestly don't know what decision I would have made.

It was a huge shock when my son was born with Down's Syndrome, but one that I quickly came to terms with.
I won't lie. He did have a lot of health problems when he was little and spent most of his first two years in hospital, but we got through it.

He's now a happy 14 year old who enjoys a very fulfilling life.
He is non verbal but communicates well with various recourses and understands a lot of what we say to him.
I know it's a cliche but I really wouldn't change him for the world. He brings us so much love and joy.

I will also add that there is a huge range of individual abilities with Down's.
My son has a dual diagnosis of autism, but I know lots of other young people with Down's who are fully verbal.

Whatever you decide just know that you are doing the right thing for YOU.
I am thankful I was spared that decision as I honestly don't know what decision I would have made.

I always hated it too. I write my own poems for my son who has Down's.

i think a lot of this comes down to what kind of people you and your partner are too - are you patient, persistent , prepared to sacrifice careers and prepared to give your lives over for the next 20 years, bearing in mind your age - because that’s the likelihood - some people really are , but do get a lot from the experience too - but only you know the answer to that -

Welcome to Holland can get in the sea.

Thank you all for your comments and thoughts. Although I know we need to make the decision for ourselves it’s just helpful to hear from other people and to consider things we may not have.

Just to add a little context, we had the initial screening which came back as 1in2 chance for all 3 trisomies. For us we couldn’t go the rest of the pregnancy not knowing with it being that high Before we got confirmation from the CVS (which I understand is diagnostic and accurate?) I think we thought we would end it if it came back positive. But being faced with the decision and the reality of the situation we’ve found it’s not that easy and we are so unsure where our heads are at.

I don’t think taking the tests means you have already made the decision. You take the test find out more and prepare yourself for the future. If I didn’t care either way I would still want the extra screening that goes with knowing my baby had DS, and care at birth. I would also have wanted to get my head around the prospect so I wouldn’t have to grieve the different future at that point. And if an early screening flags up a concern then I wouldn’t want to spend the rest of my pregnancy wondering.

I'm so sorry OP for the shock and turmoil you will be experiencing particularly after the joy of ivf being successful.

I think what other people did or would do is not necessarily helpful because as another poster very wisely said, the right decision for you might not be the same as the right decision for someone else.

Consider all available information and whether you could cope with a child (and adult) with DS and what support networks, official and unofficial you would have, whether your and your husband's family members tend to live to a good age in reasonable health as you could still be caring for a DS adult in your 80s. Most of all listen to what your heart is telling you. And consider that termination is not a "selfish" option to be considered only for your benefit. Sometimes it will be best and most caring option for your potential child. I'm not saying that is what you should do, just that there would be nothing wrong if you were to decide that was truly the best option in an awful situation.

❤️