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?

Why do people think that Ross Kemp has DS?

So sorry OP that’s so hard

i would terminate , life with kids is so hard I can’t imagine this at all

Ross. Kemp. Does Not. Flipping Well Have. Down’s syndrome.

@impossibledecision25 your options are still open, there are still tests available to you.

What is important is that you and your husband are informed because whichever option you choose, it is life changing.

CVS testing, of the placenta, is highly accurate but....

The placental genetic makeup is not always same as that of the foetus, a condition that can result in false positive result.

placental mosaicism

Further information including amnio

Keep researching, you still have some weeks to make any decision.

May the odds be in your favour🌸

I have not been in this situation but my aunt was - except they found out at birth after all the texts had come back clear. The child/My niece (she is much younger than me) has several of the more serious problems associates with Down, including leukaemia as a toddler.

Having seen what they have been through, if I were in your situation, I would keep the pregnancy and welcome the child.

Yes, it has been very hard at times, but also very beautiful. It would be different if you had other children to look after that needed much of your time too. But if you have the time, the money, and a wider family that would also love the child, I think there is much much beauty to be found in motherhood in various forms, including here. It is absolutely okay to fiercely love and want a child that is not expectedly perfect, and to welcome them into your life.

Good luck whatever you decide.

Take your time is my advice. Try and get some professional help. My experience (extensive) us positive but it will be intense on you if your child has multiple or more significant health needs. But this might not be the case. Your child may have very mild needs.

Best of luck op

As part of your decision I would consider the strength of your relationship (the odds weren’t great from the parents I met) and if you have financial security
This is very true. My marriage is rock solid but the few fights we have are 99% about our SN child.

How accurate is the test? Did they test in the womb? If not, I would question the accuracy. The reason I am asking, my parents had extra tests on me, they were told I would be severely disabled, no brain, no spine and be in a wheel chair. My parents were devastated and doctors told to terminate. My dad told them to get stuffed and I was expected to be born disabled. I was born completely healthy. Everyone develops differently and I don't trust doctors. .

There's nothing I can add that hasn't been said eloquently and compassionately by PPs.

Sending you much love xx

I don’t want to be mean (more realistic) but at 43 this might be your only chance to have a child. If you terminate you might never be a mother, how would you feel about that? I have a child with special needs. My son is 5 and non-verbal autistic. I had him at 29 and every check and scan was perfect. Life is harder for sure but I don’t regret having him for one moment. I love my son and he brings me and my family a lot of joy. I know some parents with downs syndrome children, with varying levels of ability. If it were me I definitely would not terminate. I guess I’m less scared of Down’s syndrome because I’ve had a chance to mix DS children due to my son.

I've stayed in touch over the years with a university friend who decided not to terminate her third pregnancy, found to be DS, back in the 90s. She doesn't tell me half of what she's been through, but from what I do know it would not be something I'd want to take on. The older my friend gets, the more concerned she is for her son's future. He's in supported living for the second time. The first time they withdrew him after witnessing the way a staff member was mistreating him and his fellow residents. That staff member was later prosecuted and it's only recently that my friend and her husband have felt able to trust another supported living facility.

When PPs say their DS children are living happily and independently, do they actually mean independently or do they mean in supported living?

I wouldn’t continue in your position. I wouldn’t have the means to fight the system for what they need to make their lives good or to ensure they were looked after well after I was gone.

It would be kind and right to not go ahead with the pregnancy, for me personally. Sometimes the right thing is very painful. But I would take that pain, for them.

(ETA: if it were me, and my pregnancy. It’s entirely OP’s personal choice what she does here, just to clarify)

What do you mean kind and right not to go ahead with a pregnancy?This is the Ops choice..

I have a 20 year old with DS. If I had my time over again I would terminate. I love them with a fierceness that I didn’t know existed but my god it’s been beyond hard and it’s still hard.

I was faced with exactly the same decision many years ago but I was further into my pregnancy and by the time the test results came to light (dispute over actually how many weeks along I was) I had gone past the legal time frame for termination. I am deeply sorry to read your post OP and I am sending you a hand hold - not that it going to make your pain go away……….but please know that help and support is out there and you do have time on your side to do what is right for you. Sending love 💐💐

CVS is 99% accurate even more so with abnormal result as you can't misread an extra chromosome

We made the decision to abort if any of trisomies. Yes some people with downs can lead semi independent lives but heck of a lot can't add in adhd, autism and congenital abnormalities. Risk was too much for us.

Its a very very personal decision. Don't feel you have to explain yourself to anyone.

It reads wrong, I’ve edited it!

Oh god what an awful predicament for you to be facing.

The honest answer from me is I dont know what I would do in your position. I know what my morality, whilst having the comfort of not being in that situation, would want to do, but I am not sure faced with the reality that I could say I would make the same as my theoretical choice.

I know a family who have a child with Downs and the child has been lucky that the impact oft he genetic mutation has not been massively impactful so far. I have seen the campaigns byt the lady who wants the law changed over abortion for downs diagnosis to be tightened etc. But the reality is you won't know the full extent until the child is born.all of the issues are life limiting and some are life threatening/ending. If I am honest I am not sure i could continue with a pregnancy knowing there is a high potential for complications that could be incompatible with life.

In this type of case I think you need to put the child's future first.
Is it morally right to bring a child into the world who will find life harder than most other people?

The point is not that this may be your only chance to have a child, but what kind of future your child may have.

Personally, although some people with DS live reasonably happy lives, it's fraught with difficulties of other co-morbidities in most cases.

I'd not go through with it, but that's a personal opinion.

I don't think anyone is in a position to recommend anything here but it does sound like you have a confirmed diagnosis with CVS. I just wanted to say I don't know your particular struggles with fertility and how long you have tried and if you are willing to try again, but just wanted to say 43 may not be your last chance yet. Trisomies are random, maybe the next attempt will produce a healthy baby, just a thought! I am pregnant at 44 and know many ladies getting healthy babies in their 40s

A difficult decision only you and your partner can make - you have to make the decision that is right for you and your partner.
Whatever the decision do not feel guilty as only you both know what is best for you.
I’m sure you are finding all the information you can to make an informed decision.
Sending a hug x

OK I understand now.

Honestly it would depend on how much money you have. I know someone with a DS child who is non verbal and incontinent but very placid and happy. They moved to the caymans or a country like that as help us cheap and they can live a relatively normal life as they have a live in house keeper. She says she absolutely hates when people say it’s a blessing .. she said it was been unimaginably hard even though the child is lovely . It’s just the life long commitment and worry of what happens when they are older. It is massively mitigated but then living where they are and the fact they have a lot of money. It’s an awful choice to have to make

We went through ivf, screening is not offered here routinely and termination isn't legal. Not that we would have chose it. For us personally, regardless of the outcome we would have kept our baby because we wanted him so much. Ive known down syndrome children and adults and I've seen they are just as amazing as any other human being and for many they still have a great quality of life

I’m so sorry you are in this position OP. I am currently in a similar one, although perhaps my circumstances have made it easier for us to decide on next steps. My baby also has a major heart condition that appears to be life limiting. We also already have one child and the impact on them of having a sibling with high needs would be immense for a number of reasons. We have therefore booked a termination for next week.
Your circumstances and decisions may be very different but I wish you all the best whatever you decide. It’s a really shit time.