Termination for Down syndrome - heartbroken

[Giantguineapig]

Name change for privacy.

I'm at the end of my first trimester, and I've had an NIPT, which shows a very high risk of Down syndrome. I'm waiting for some more invasive testing to confirm, but I've been told that with the new NIPTs, the likehood of it being incorrect is very very low.

I'm sure that termination is the right decision for us. I've worked with adults who are very disabled in the past, and I know that you can lead a fulfilling life with serious disability, but I've also seen how hard things can be for parents of disabled adults. I know that people with Down syndrome can be healthy, but I also am aware of the risks, and that path is just not for me.

This is pregnancy was probably also my last chance to have another child. I've been struggling with infertility, getting older, and not sure I want to go back again.

I don't know what I'm hoping to achieve by posting. I'm just miserable.

[Giantguineapig]

Thank you everyone, it really does help to hear everyone's stories. I will try ARC.

[Albgo]

In your situation I would make exactly the same decision. Sending love and solidarity. Hugs OP.

[Frannibananni]

I’m sorry you are going through this. For the little it’s worth I would do the same.

[Pumpertrumper]

We would do the same OP, heartbreaking as it is.

I’m so sorry you’re going through this x

[Onadifferentuniverse]

I would do the same op, I’ve worked with adults with learning disabilities and seen how hard it is even with mild symptoms from it.

It must be really hard to watch your child never grow into an adult like you would with n typical children, and all the stress wondering who would be there for them once you’re not and that’s without knowing any health issues that stem from the d syndrome.

I hope whatever happens you find a way to get through it 🌸

[Onadifferentuniverse]

@sickofthisyear I genuinely just don’t think people understand the reality of what comes with Down syndrome and generally end up realising after being faced with that as a possibility.
Nobody should be judged for terminating for this reason.

I hope you’re ok.

[rwalker]

For me you love and cope with anything but it would be the fear of your child outliving me and what life would hold for them after I've gone .

Just do whats right for you.

[theviewfromhalfwaydown]

I would do the same in your situation op. I work with severely disabled children and before working here I had no idea how severely disabled some children with downs could be. I think lots of people just have the media version which isn’t always the reality. I would also worry about what would happen if they outlived me.

[Mmn654123]

@Readandwalk

Good luck with your decision op. I think lots of it is to do with where you live. In Ireland people with Downs are totally loved and go to school to the equivalent of A Level. I teach here so know this. Lots of support and help. However its your body, your choice.

I find your post both offensive and idiotic @Readandwalk. Good first and last sentence though.

Of course people with Downs are loved. Do you think that’s unique to Ireland?

Do you imagine only Ireland educates those Downs children who are capable of mainstream education to A level?

If you believe that, then in what was is it ‘to do with where you live’?



Op, I wish you the very best for the future. A sad time for you and your partner. x

[Mmn654123]

@Readandwalk
Sorry that should read

If you don’t believe that, then in what way is it ‘to do with where you live’?

[Dcadmam001]

Wait for the amniocentesis test. I was given a one in 13 chance of Down’s syndrome. Test revealed no issues. My son is 19 years old tomorrow but I can remember the sheer worry like it was yesterday. Take it a day at a time and only you can decide what’s best for you

[whiteroseredrose]

Sending love and strength. I would make the same decision.

I had an amniocentesis with my 2nd DC as the nuchal scan gave a high chance of Down's.

There was a lovely boy with Down's in a class I worked in. He was doing really well. However he took up so much of his parents' time and energy that his siblings barely got a look in.

So for the sake of my DC1 as much as anything I would have had a termination.

[Hyperfish101]

That’s very tough OP..

It is a very difficult choice. No judgement from me. I do think it’s sad though that we live in a society where disability is still so stigmatised.

[Twizbe]

@Hyperfish101

That’s very tough OP..

It is a very difficult choice. No judgement from me. I do think it’s sad though that we live in a society where disability is still so stigmatised.

No judgement from me yet I'll stick a thinly veiled judgement in at the end

[Ashworth90]

Oh OP I can’t imagine the decisions going through your head right now, but please, please, please don’t make a final decision until you’ve had the invasive test. I know you said you are waiting for testing but your decision is pretty much made, but I had a friend with a high risk NIPT who then subsequently had an amnio which came back completely clear for DS.

I had a NIPT done at 10+5 and I’m currently 30 weeks, but I researched a lot about false positive results etc.. and no screening test comes without those. I have everything crossed for you 🤞🏻✨

[lovemakespeace]

positiveaboutdownsyndrome.co.uk/

It may be worth taking a look here too OP.

[Hyperfish101]

It wasn’t a thinly veiled judgement of the op. It was a comment on how society views disability. I grew up with a very disabled brother so I know how it works.

[gubbbbbddaaaa]

If so the same and I have a son with sn that presents similarly to downs . He is the most wonderful happy boy but his future scares the shit out of me !

[TheBitchOfTheVicar]

I would do exactly the same as you OP, and heartily concur with those on this thread who say that the majority of people with DS do not take A levels, live independently, swim for the Olympic team and so on. It is a constant worry, commitment, and most likely a life of isolation for parent and child.

[Ansjovis]

I'm very sorry you're in this position and I do hope that the difference in views shown in the replies you've received hasn't caused additional upset at this time. I have a disability myself that could not be detected prior to birth, some members of my family still find it difficult to cope with and I don't blame them. Bringing me up was a very tough job and I don't have anywhere near the level of impairment that comes with DS. Committing to bring up a child with lifelong disabilities is not something that everyone can do, especially in this country where getting support is always going to be an uphill battle.

Be kind to yourself OP, take all of the support that you can get to help you through this difficult time.

[ThisIsNotSocialDistancing]

I would make the same decision OP. It's very hard, but so is a lifetime caring for and worrying about a severely disabled child. I have a disabled child myself (not DS) who needs round the clock care and can do nothing for herself. If I'd known before she was born, I'd have terminated, for all our sakes.

[gottakeeponmovin]

I would do the same OP.

[Fastforwardtospring]

I had the amniocentesis after high risk Nuchal fold at 12 weeks knowing full well the heartbreaking decision we would make, it is truly devastating. Sure they can confirm Downs Syndrome but to my knowledge not the severity, that’s the part I couldn’t cope with. You must do exactly what you feel is right for you💐

[Kalula]

@lovemakespeace She has already made her decision. Please stop trying to guilt her into making the wrong decision, and that site is full of lies.