Today's ruling re Down's Syndrome

[Shirazboobaloo]

Sorry to hijack AIBU for this but can someone explain this ruling to me please?

What I can't understand (from press reports) is how this has "come to this".

Who is Heidi Crowther and who are those supporting her?

I am genuinely confused but don't know where to ask

@LuaDipa

How many of the people saying that this is manipulation would be happy to terminate their own viable pregnancy beyond 24 weeks, 28 weeks maybe, 32 weeks, 38 weeks?

A viable pregnancy has nothing to do with it. A pregnancy can be viable even though the dc might have a life expectancy of hours.

I think by posing the question you have in this manner, you are minimising and belittling the harrowing experiences some parents have to live through. I can’t possibly comment on whether or not I would terminate a pregnancy at 38 weeks because I have thankfully never been through a situation where it would have been an option. I assume that anyone who has made that difficult decision has done so after a lot of heartache and soul searching after being presented with all of the potential outcomes. I don’t judge them, I feel dreadfully sorry for them having to decide the right course of action to minimise suffering for their unborn child.

Doesn’t she simply mean healthy fetus here? Of course it would be rare to reach these points and request a termination (and it would never be granted).

However, we don’t legislate based on the frequency of an action, but the morality of an action. And we’ve decided, as a society, that termination of a healthy fetus beyond viability is unethical. That’s generally taken to be around the 24 week mark.

Same as the US.

Continental Europe has shorter limits, usually around the 12-14 week mark for an otherwise healthy fetus.

@ArcheryAnnie

How many of the people saying that this is manipulation would be happy to terminate their own viable pregnancy beyond 24 weeks, 28 weeks maybe, 32 weeks, 38 weeks?

It's horrible to put it in terms of being "happy". Who would be "happy"? It's about making the best choices you can in a horrible situation.

Exactly this. I had a TFMR at 22+4. I didn't want to. I wasn't happy to. I did what was best for my baby and my family. In an awful situation.

And I also respect that Heidi leads a rich and happy life and is offended by this ruling

The fact that she leads a rich and happy life is the problem here though. She's effectively saying 'all people with downs are like me' and therefore she is offended. Where is her knowledge and understanding that other people with downs don't live her life?

I had my last child when I was 40 so I was offered and had an amniocentesis at 17 weeks (not at 16 which is when it should have been) and then had my anomaly scan at 22 weeks. If there had been anything wrong it could well have been after 24 weeks when I mhad all the relevant information.

I knew that I would have had an abortion if the tests had come back for DS not because I didn't want the baby but because as an older parent it would not have been right for me to put the responsibility of looking after a disabled adult on my two existing children.

I was lucky but dd was the last child I had because I could not go through all the tests again.

People have to make difficult decisions for lots of different reasons and I am sure no one has a late abortion for no good reason.

Where is her knowledge and understanding that other people with downs don't live her life?

She was interviewed on the radio this morning and when asked what her next steps would be she said she’d keep fighting, going to other courts and might even take it to Donald Trump

Her understanding of other people's circumstances is probably up there with her understanding that an Aberdeenshire business man will have limited influence on UK abortion laws!

@nokidshere

And I also respect that Heidi leads a rich and happy life and is offended by this ruling

The fact that she leads a rich and happy life is the problem here though. She's effectively saying 'all people with downs are like me' and therefore she is offended. Where is her knowledge and understanding that other people with downs don't live her life?

@nokidshere with the greatest respect - how many people do you know with Down syndrome? No one is saying all people with Down syndrome are exactly like Heidi. Because, you know what, people with DS are all individuals and all different with varying abilities, strengths, weaknesses and needs. But - as someone with a child with Down syndrome who knows loads of families in similar positions - I am telling you that the vast majority of us share rich, full lives with our loved ones with DS. Our lives may look different to yours but this prevailing idea that the lives of people with Down syndrome must be bleak because they have a learning disability is ableist nonsense.

Listen to those who live different lives to you and have an open mind that difference does not automatically mean deficit.

And I think that abortion should be decriminalised and available to term for all. I think anyone should be allowed to terminate a pregnancy, including pregnancies where the baby has DS.

I disagree with her case but I’m finding the repeated assumptions made about people with disabilities and their families from people with no or very little anecdotal experience quite hard going to be honest.

This is the essence of the matter - the only way in which babies with disabilities can enjoy the same standard of living and care as healthy ones is if they’re born to parents who want them & feel they can cope. Creating a system where disabled babies languish in the care system just creates another set of inequalities.

This.

And I doubt Heidi is in a position to understand this sad fact.

Why do people keep saying if you don't want to raise the child.
Its not about raising your child its about not wanting to see your child suffer and struggle through there life until they finally die from whatever condition they have.

If we want attitudes to disabled people to change - and I am hoping and presuming that everyone on this thread wishes for this - then forcing women to bear children they do not want and/or cannot cope with is likely to be entirely counterproductive to that aim.

Our lives may look different to yours but this prevailing idea that the lives of people with Down syndrome must be bleak because they have a learning disability is ableist nonsense.

I suspect we often end up at the point of arguing that not all people with Down’s syndrome are people like Heidi to explain why women might abort because of the stigma surrounding abortion generally and because of the prevailing view many people have that abortion is supposed to be something a woman would only consider in the worst circumstances. Many women will feel backed into a corner and as if they have to defend terminating a pregnancy of a disabled foetus as being because they are afraid of the very worst bleakest outcome.

Whereas ideally, women should be able to say “I know that having a child with Down’s syndrome won’t necessarily mean them being severely disabled with no quality of life, but even if they are only mildly affected there will be many unknowns, it will make my life harder, and it will likely impact on how I always viewed my and their life turning out; and honestly I’m not prepared to take that risk.”

Just as women should be able to terminate any pregnancy simply because she doesn’t want to raise a baby or have her life changed.

@Covidworries

Im pro choice too BUT a pregnancy can not be terminated after 24 weeks in most cases. After 24 weeks if the fetus isnt viable is different BUT DS shouldnt be a reason to terminate. Currently a DS baby can be terminated up to term and that isnt right as DS doesnt mean the child isnt viable or would be unable to servive outside of the womb. Plus DS isnt the only thing a child can be born with that causes learning difficulties but most learning disabilities cant be checked in the womb so the ruling has been a kick in the face for the DS community by stating their life isnt as important as a non DS life regardless of any oyher disabilities or not.

I agree with this 100%

There is a world of difference between aborting a foetus that would not survive outside of the womb and aborting an otherwise healthy child with downs syndrome.

I have a child with severe learning difficulties that were unknown at birth .......is his life worth less?

Whereas ideally, women should be able to say “I know that having a child with Down’s syndrome won’t necessarily mean them being severely disabled with no quality of life, but even if they are only mildly affected there will be many unknowns, it will make my life harder, and it will likely impact on how I always viewed my and their life turning out; and honestly I’m not prepared to take that risk

This is probably the reasoning. At least that was my reasoning when I opted for the 10-week blood test.

I didn’t want a child with DS. I didn’t care about the severity or any comorbidities. I just didn’t want a child with the condition.

I would do the same with autism if such a test existed.

I would have felt guilty about it if it came to that, but the guilt is preferable to the reality of having a child with DS.

It sounds awful tho

@ComtesseDeSpair
Whereas ideally, women should be able to say “I know that having a child with Down’s syndrome won’t necessarily mean them being severely disabled with no quality of life, but even if they are only mildly affected there will be many unknowns, it will make my life harder, and it will likely impact on how I always viewed my and their life turning out; and honestly I’m not prepared to take that risk.”

Yes I 100% agree with this. And I’d give a woman going through that decision making process virtually unlimited leeway to express those fears and worries in whatever terms she felt she wanted too. But I’ll also call out lazy assumptions made outside of those circumstances because these assumptions that having Down syndrome must equal misery actually impacts my child.

"Otherwise healthy" is doing a lot of heavy lifting, there.

Any pregnancy can result in the birth of a baby with disabilities. (Any pregnancy can also end in a mother having disabilities she didn't have before, and not enough is talked about that.) But its reasonable for every pregnant woman to assess the risks ahead of her, and take action accordingly. I mean, there's tons of threads on MN of the "should I have a third DC?", with the answers being at the "can you fit them all in the car?" level. People have children - or don't have children - for all kinds of reasons, some big, some small.

There's lots of reasons that women dont want to have a disabled child that aren't to do with the worth, or otherwise, of the child, and more to do with their own circumstances. I am an older mother - an "elderly primagravida", in the wildly flattering medical lingo - and had a discussion about what I would do if my DS's nuchal fold test came back positive. My DS was my first, so we would have kept him, no hesitation at all. But if I'd become pregnant a second time, and the nuchal fold test came back positive, I'd have aborted, because I would not have wanted to leave my first DC with the responsibility for a disabled sibling after I'd gone, and because I would not have been able to make financial provision for two kids in the same way, which matters if one is unlikely ever to be able to support themselves financially. Other women may make completely different decisions based on their own circumstances, and that's fine, too.

Every child a wanted child. (And I'd say that most of the pregnancies that end up in late term abortions are wanted, even so, which is incredibly hard on the pregnant women who are put in the position of making the best choice for themselves and their families that they can, under difficult circumstances.)

.......is his life worth less?

But if the argument is simply that all life should be worth the same, why does it matter at what age of gestation a woman makes a decision to terminate? Surely whether it was at 14 weeks or 18 weeks or 30 weeks is irrelevant, if the same woman who chooses to terminate a foetus with Down’s syndrome wouldn’t have even dreamt of terminating had it been a perfectly healthy foetus.

@Granllanog but it's not that your child, a child with DS, or a child with another disability is worth less. It was never about that.

You cannot know when you have those tests whether the child in question with a disability will be one who is 'otherwise healthy' and can have a great quality of life or will be one with heart defects, comorbidities, a shortened life span and/or severe learning disabilities and behavioural problems. You don't know which you'll get.

If someone feels they would be unable to cope with a child who could potentially need high levels of life long care and all the stress and toll this takes on them and the rest of their family, they should be able to make that choice. It isn't the same as saying that those children don't deserve to be born.

The alternative is to force women to have children they know they cannot look after adequately and who could eventually (potentially) end up in care. Isn't one of the reasons terminations exist in the first place to avoid this happening?

I say this as the mother of a profoundly disabled child. I love him with all my heart but if I had known what his life was going to be like and the impact it would have I may have made that choice myself.

@UsedUpUsername

I didn’t want a child with DS. I didn’t care about the severity or any comorbidities. I just didn’t want a child with the condition.

That’s fair enough. I didn’t want a child with DS either. It terrified me. She is pretty great though

Choice is good. Access to abortion is hugely important. Assumptions about a minority group are bad.

One advantage of DS is it can be picked up very early and often is. Parents have choice, if it's a risk they want to carry, nobody has the right to say a parents decision is right or wrong. They made the decision based on the knowledge and belief that they have.

Other conditions are more difficult to pick up either from blood test or scans. And remember things go wrong along they way too. Those women should still have the right to decide with the best information they can get.

I didn’t want a child with DS. I didn’t care about the severity or any comorbidities. I just didn’t want a child with the condition.I would do the same with autism if such a test existed. I would have felt guilty about it if it came to that, but the guilt is preferable to the reality of having a child with DS.

I feel exactly the same except that I wouldn't and don't feel an ounce of guilt. There's a lot of judgement heaped on parents and siblings of people with disabilities who don't subscribe to society's view of disability as 'such a blessing in your life'. It's uncomfortable when people can't just handwave the real problems away.

Speaking from experience there. I feel like I've had a hard enough road with autistic sibling as it is and if I can avoid going down that road as a parent myself, I will.

Mjfdrjjbf

Thanks for your voice and your perspective
Really really pleased to hear you on this thread
And I’m happy that your DD is great 😊

I’m bailing out of the discussion
My views on this topic are emotional and from my heart rather than logical
I also was totally smitten with a DS child in my sons class (I did a lot of help) so I’m probably , definitely biased

Was reading this thread and thinking about how I paid almost 500 quid for the harmony test at around 12 weeks. It was an expensive way to know as soon as possible whether my child had ds or other conditions or not.

So if the abortion limit had changed, people like me with enough money in the bank would be able to afford the test. Waiting for things to become clearer on the 20 week scan would be left to the people who couldn't afford earlier private testing.

Those financially better off would be less likely to have a pregnancy with ds beyond 24 weeks.

Those financially worse off would be unable to afford testing and therefore more likely to have a pregnancy with ds beyond 24 weeks.

It would be the people who already needed support in the first place now needing more support than ever. The vulnerable would become more vulnerable. DS children would be more likely born into families on the breadline than families who could afford the additional support and resources that these children would need.

@Pongo101 this is a really good point. The current laws are in place to protect women who for all sorts of reasons have unequal access to healthcare

That’s a good point pongo and exactly why we can’t take away choice from women.

"if I can avoid going down that road as a parent myself, I will."

You can only plan so much.
You can test all you like and have a severely disabled child.
Having the option prenatally to decide what you do or don't want is fine
And of course option should be there to decide or not on your pregnancy.

but a little disingenuous to believe you can avoid every disability or difficulty.....you cannot.

It s more

"if I find out prenatally there is an issue i will abort."

"If I find out prenatally there is any issue at all I will abort"

That s every woman s choice...

That s why I fall on make it legal for any issue ... any including the woman s wishes. the numbers post 24 weeks will always be small

"If i find out postnatally there is an issue I will.... "
...Will what?
You can not avoid all issues.
Your parenting journey may go down that road anyway
Parenting may be challenging or not.
Some parents are challenged even with a child with no issues...