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?

It isn't horrible or scaremongering to simply share her experience or are only positive experiences allowed?

My son doesn't have DS but he is disabled and it absolutely ruined my career. It can and does happen, not always of course but it is something that should be at least considered.

I'm talking about passing on incorrect hearsay information about sexuality in such an exaggerated way. Of course the behaviour of her relative may well be true. But there may be many reasons for this, not just DS. Poor behaviour management, split family etc. In my experience of working with SEND children and adults for many years, it is not the norm.

I have never known one to have high sexuality, in fact usually the opposite, very little interest in that side of life at all. What a horrible and scaremongering post.

What on earth is scaremongering about someone having a high sex drive? I'd have thought sex is one of a fairly short list of fulfilling things someone with DS can do completely independently.

...and FWIW sex drive was mentioned to me by someone who cares for DS people. She had someone with DS in her care who had a cling film fetish and zero inhibitions about expressing it. In cafes, supermarkets,
anywhere. Of all the things wrong with that poor person's life, sex wasn't one of them (That's certainly hearsay, so feel free to ignore.)

I think you are looking at this in the wrong way. No child is perfect and everyone rolls the dice when they have a baby. If you have additional information about the risk of having a child potentially requiring a hell of a lot more support than the average child then you are able to assess your capacity to parent the child and how this will impact the existing family unit. Quite frankly, lots of people simply don't have the desire, capacity or capability to parent a child with additional needs well. It does nobody any favours to encourage people to continue with any pregnancy where the baby will be born in extremely unfavourable circumstances and will be born into a cruel and unfair world where too often the support and help required from the state simply isn't there and so much responsibility is placed on the family unit.

You will see often people terminate pregnancies when they know for whatever reasons they won't be able to cope with the baby. It has nothing to do with whether that baby's life is 'worth continuing' but more to do with the life that could be offered to the child by the parents and how having a baby would impact the parent's life and the existing siblings.

There seems a real confidence from people to generalise about the personalities / challenges and joys that arise when someone has Down syndrome. All the traits described in this thread could occur in any child. When we have a child with Down syndrome, we know a few more things to expect (delays etc) but everything else is to be seen as they develop. Over the last 5 years, within my cohort of 10 oldest friends we have all had children. In that time, one friend lost their husband aged 32, one lost their 2 year old to a brain tumor, one had both parents die within 3 months, one’s partner went off with someone else and started a new family, one friend has found out she is going blind, and several have a couple of kids and all is so far so ‘smooth’.My child has Down syndrome, and after the initial heart ache from shock and uncertainty he has brought only joy, and is loving his toddler life. This is the opposite to what all those other friends have been experiencing. Yet it’s my child’s worthiness of life that gets discussed time and time again. None of us knows what is around the corner. Me included. Also none of knows what we are capable of, but for most of us it’s a lot! I have juggled and fought like I didn’t know I could since I had my boy, and it’s paying off, and I will continue to do so, although currently the need feels far less. My point is, we can only plan and control so much, and sometimes it’s just about finding the joy in the life you have, I absolutely appreciate this can be easier said than done, but I also don’t know what other choice we have. Whatever the OP decides to do in regards to this pregnancy I hope they find happiness in their day to day and relish in the experiences they get to live!

it’s just about finding the joy in the life you have,

...and a DS child will impact on the life the OP has.

I’m really glad things are working out so well for you but it isn’t your son’s worth we are discussing, it is helping OP work through options with regards to her own pregnancy. I don’t think a society which permits termination for medical reasons through maternal choice is at all at odds with a society that cares for and respects people with Downs Syndrome.

I absolutely agree. But the level of anecdote here must be exhausting if the OP is still looking at this. It just so happens we can test for Down syndrome, we cannot test for most of life’s shocks and difficulties and variables. I had all the testing, had all low chance results, so no idea how I’d have felt with different results. I just think it’s important to acknowledge that life is full of unknowns. It does actually become at odds for the care and respect for people with Down syndrome because there is are less people with DS being born and there is an expectation that if you get a pre natal diagnosis you will terminate and therefore effort and funding goes into pre natal diagnosis rather than services and medical treatment that improve the life and opportunities for people with DS, but that is a different conversation. I am not against pre natal testing, I am not against tfmr, I am tired of DS being hailed as the worst thing ever as it isn’t. And where peoples experiences seem particularly negative that seems (maybe I’m wrong) more to do with particular medical needs and poor care and support being available. Imagine if we invested in phenomenal life long care and support and equitable education as our priority, how different it might all feel

Yes. And unfortunately we are none of us psychic, so it is impossible to know how.

I know what you are saying and I know all too well that you can't prepare for all of life's shocks as my son suddenly became disabled at the age of 8 due to complications with cancer and life changed in an instant but even with all of the investment and support in the world, some people will still feel like they can't offer a good life to a disabled child.

DS is definitely not the worse thing ever and cancer isn't always either, though as you unfortunately know from your friend's daughter, it absolutely can be.

Are you okay OP? I’m sorry your thread has turned out like this. Lots of love whatever you decide. There is clearly not a straightforward answer

So true

My sister with DS has been loved and cared for by her mother (until her death) and by her siblings (continuing now). She has been, essentially, as all other humans: funny, entertaining, loving, infuriating, pride-inducing, challenging. We have adjusted our lives around her to some extent. Have there been times when we have felt resentful towards her? Yup, absolutely. But, in general she has enriched our lives.

The thing that is certain is that having her as a sister has not been as any of us imagined it. None of us would wish her away. Sometimes I wonder how life would have been if she had been 'normal'; but of course we will never know. She might have been a Nobel prize winner or a vagabond. But she's just herself.

Life is full of uncertainty and I would never judge someone who decided not to go through with the pregnancy. We each make decisions based on our own peculiar circumstances (and sometimes we get those decisions wrong). Do your best for yourself and your loved ones and be proud of yourself

Yes, I apologise for my part in it. I'll shut up now.

Good luck OP. I wish you and your family a terrific life however this goes.

DH and I recently found ourselves with a higher chance risk at our 12 week screening. The midwife told us around 80% of couples with a diagnosis choose to terminate. Have you been offered an amnio? They also said that we would have to have this before choosing to terminate, which can’t be done until after 16 weeks, at which point I know I would feel baby moving and become more bonded.

Very fortunately for us our results came back that our baby does not have downs. I still have no idea what we would have done. To be honest I believe my DH wanted to abort but of course it is harder for the woman who has to go through with the termination which is more difficult at that stage of pregnancy. We already have a DS who is 1 and find life difficult sometimes just juggling his demands.

Im really sorry you’re in this position OP.

I hope you are ok OP. It's the most difficult position to be in, I wish you all the best whatever you decide. I'm glad I didn't know before I had my son. I don't know what I would have done. My heart goes out to you.

Wow, that's awful.

I know people with down syndrome who are amazing.

I find it morally conflicting.

I had the test but I still don't know what I would have done with the information. I figured that I would not need to work out if it was negative. If it was positive, I would have gone in to the situation being prepared and informed. But realistically, it's a lot to process....

It was some time ago he's now in his mid thirties but yes awful. They are coming from a place of knowing how hard life can be for a person/family I guess. I don't feel it's a reason to discriminate though. I've worked and volunteered and had the privilege to know many people with downs and other conditions. My experience of them is real and joyous. There are many things for their families to manage and meet head on and not everyone is up to that but doesn't mean that eugenics should be at play. The test helps a family prepare. There are many resources and organizations that help people to adjust but you have to be proactive S well.

I don't think it was awful. The PP you quoted had testing 30 years ago. It is only recently we have had good non-invasive tests. So in order to definitely know if they had ds, they would have had an amnio. This would have carried a miscarriage risk of about 1 in 100. All the medics were saying was we wouldn't have put your baby through that unnecessary risk if you were definitely keeping it.

I know plenty of families from our local support group who have had their children with DS within the past decade, discovered prenatally and then were badgered about their “options”by the doctors and midwives throughout the rest of their pregnancies!

Hopefully experiences like that will become increasingly a rarity as training on how to deal with diagnosis improves (through things like the Down’s Syndrome Association’s “Tell it Right, Start it Right” programme). Clearly, everyone should be made aware of their options, but once the mother has confirmed that they still want to keep their baby that should be that, they shouldn’t be repeatedly asked about termination right up to 38 weeks! It’s truly heartbreaking. Thankfully, not all the stories from my friends are like that, and there are examples of much more enlightened and accepting HCPs. My best mate has just finished training to be a midwife and I know she’ll be wonderful and non-judgemental in this situation.

My experience was also over 30 years ago but my Consultant was happy to text even though I said I would be keeping the baby so it varied back then

A lot of posts on here are very geared towards if you did the test you must have known what you wanted to do and that medical professionals would be assuming you would terminate because why take the risk... Etc.

I honestly don't think anyone can know how someone will feel when they get those results, or why they may have chosen to take the test initially.

Not forgetting that the CVS and amniocentesis test are not just for down syndrome but also Edwards and Patau (which are a completely different level of disability).

We had the amniocentesis done. We knew the risks but we flagged highly for all 3 top Trisomies. We had decided that should the results be Edwards or Patau we would terminate, but we still had not decided on what we would choose should the results be Downs, especially as baby was looking like they may have heart complications in addition.

Our experience was that no drs assumed because we did this test we would then go onto terminate. Most were clear it was our choice and we would be supported in what we chose. We had one genetic midwife who was very clearly against terminating any pregnancy who we found harder to talk to but every one else was very neutral.

I am so sorry you are going through this OP I can't even imagine how you must be feeling because we never had to take any further steps as our results were clear.

Only you and your partner can make this decision and it's important you seek as much support as possible on this journey.

Why would you take a test with a possibility of killing your child if no major decision was hanging on it? 🤯

I didn't but my Consultants point was if knowing would help me prepare them he was happy to do it. I suppose he's seen more parents coping with the news at birth so he might have good reason to think having time to prepare us worth it. He was very kind and supportive and accepted that I didn't want to take the risk.

He was also lovely two years later. I had an appointment come through to see him, I thought it was because I'd had a threatened miscarriage but he didn't know about that but wanted to see me due to my age. When I explained what had happened he immediately offered to see if I could be fitted in for an immediate scan to see if everything looked ok. I did, he did and the scan was perfect and I was very relieved.

To be honest I think many women who have the test don’t really think about the potential outcomes before they have it. I definitely didn’t with my first baby, my midwife just sort of asked if I was to have the screening in a very blasé way, when I asked more about it she said most women did the test so I did as well.