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

What a difficult and complex issue! It's not black and white and my heart goes out to parents who've endured TFMR as well as persons with disabilities, who might be feeling like the law says their lives are less valuable.

so true

…

[quote SweetBabyCheeses99]@abcdeg “ I agree with the ruling but you raise a fair point about DS not being a life limiting illness”

DS is most definitely a life limiting condition. Have you ever seen a pensioner with DS?! Medical science in the developed world has only just succeeded with getting the first generation of people with DS into middle age. But not without added suffering. Almost all show symptoms of Alzheimer’s by age 40 and it comes with additional depression and anxiety. It’s not just childhood quality of life that should count.[/quote]

No I get that, and that's also a fair point. But you could say the same about parkinsons(?) or similar illnesses which affect middle aged people. Or early onset conditions or anything

DS is life limiting but I think you know what I mean at the same time. It's not like it's an immediate death sentence in infancy, you can still have many good years of life. So yes, it shortens your life but isn't necessarily completely crippling.

Obviously, it's unknown at the time of pregnancy (plus raising a disabled child is not to be taken lightly) which is why I already said, I don't think anything should be overturned

Women don’t have late abortions for shits and giggles. The numbers are small and the circumstances often sad. I have a friend who has a child born with severe genetic abnormalities that didn’t feature on the scans. The child has had countless operations and will never be independent. As much as the child has brought joy, there has been immeasurable sadness and pain but also fear for the future. No-one knows what the life expectancy will be but my friend is the only person I know who hopes her child goes before she does because she is so worried about what would happen around care if she’s not around. If the condition had become apparent during late pregnancy she have would aborted knowing what she knows . That choice is perfectly valid and I’m very relieved Heidi lost the case.

People with DS can be killed up until the moment of birth. Which is sick af whether you're pro life or not. People with disabilities are quite often against screening. Deaf people, autistic people have been vocal about not being screened for. It's saying that the world be better off without them, that they deserve to die because of who they are. Who would be happy about that?

As an autistic person, I support screening. What do you know, we are not a monolith...

I can't imagine someone would make the decision for late abortion lightly. It's probably a harrowing experience all round. But if we do eventually vote to ban it, we will have to be prepared as a society for an even greater burden on the NHS and social services. And hopefully many of the active campaigners would step up and adopt severely disabled children to prevent them from being restricted to institutions for their entire lives. In some cases there are no happy endings available at all, sadly.

As early as possible, as late as necessary for all women in all circumstances - necessary to be determined by the pregnant woman only. If it's not inside your body, then you shouldn't get any kind of say.

The whole situation is very very difficult. It divides the special needs community.

The problem we have as a society is that the second the child is out of the womb, whether the mother wants that child or can cope with a child, she has no right to kill it.

That didnt really pose too much of a problem when we considered the point a baby is born to be the point life begins.

But medicine tells us it isnt. Life, as we think of it, begins far earlier than that.

I had 3D scans with DC. What was on those scans was a baby. Complete with distinct characteristics and features that carried through to their "life". It was still only 24 weeks. I could have still terminated at that point for Down Syndrome.

It is not "just" a featus at 24 weeks.

On the other hand...

DS has significant disablities. You cannot test for DS' problem antenatally. As wonderfully incredible as my DS is: if I could have chosen to have a child without his disabilities, chosen not have a child who needed 20+ vials of blood taken to identify his correct medical conditions, not to have a child who will probably never have a family of there own, who isnt in pain every single day, I would in a heart beat. As much joy and happiness there is in his life there is equal amounts of pain and sufferering.

If I had the choice, if I knew that was what his life was most likely to be like, should I have the right/legal obligation to put him through it. If his disability was wiped from the earth I would be cheering. DS isnt his disability.

Does this devalue someone? Yes in the eyes of someone with Down syndrome it may well appear that way

So its so very complicated. The law hasnt kept up with medical science and correcting it is unlikely to be a popular move in this day and age

@Carboncheque

’It terrifies me that so many people think women should be allowed / encouraged to terminate pregnancy for any reason’

It terrifies me that so many people think women should be forced to give birth.

They said 'for any reason'. Not sure a late term abortion of a healthy fetus is any less traumatic than a c section. Main difference is baby comes out dead vs alive.

I mean, for any reason isn't even the law now - in the U.K., one of the most advanced countries- but people on here act like it's so outrageous to be against it, or at least morally disagree.

I'm not comfortable with the idea of such late stage abortions, but I'm very much pro choice and appreciate that there may be situations where a woman/man decide this the right thing.

I've got two friends on Facebook with children with down syndrome, they are very vocal on the matter and I can emphasize as I can see why they have interpreted as their children's lives not having meaning because they have down syndrome.

Which is completely not the truth, I think majority of people would agree that once that child is born that they want that child no matter their disability to lead a happy, healthy and fulfilling life and that they would want society to enable that childs right to enjoy a quality life.

However, most of these posts from people who are anti termination for down syndrome are painting a very rose tinted picture. The majority of down syndrome individuals you see are the individuals who are high functioning, able to go about their lives with levels of autonomy, able to develop personal relationships, hobbies, goals and aspirations.

The individuals that are rarely mentioned are those who are low functioning. Those who require full time supervision all their life because they forget to chew, try to put outdoor objects in their mouth, would run into roads, screams and cries, isn't able to communicate, is doubly incontinent, doesnt understand its not appropriate to take pants off in public, is in and out of hospital all the time due to being naturally more prone to respiratory conditions and cancers. - and before anyone thinks what I've wrote Is an offensive list of descriptions, these are genuinely individuals I have worked with. 2 adults I worked with required eye sight observations over night, every night even as they slept as they were such a high risk to themselves. And this will likely be the case for the rest of their lives.

I wouldnt for any second say they shouldn't be alive, but from the mothers/fathers perspective when you have a child, you typically expect full on parenting for a few years till they get their independence and you can focus on other things such as careers and just generally having your own life. If you have a child with significant needs you dont get that. It will be 24/7 worry till the day you die. If you have a child / adult with significant care needs that will dominate your entire existence, you will have to live with hard decisions such as potentially placing your child/adult child in residential care, the worry that when you die you have to make arrangements that they are supported. I have seen parents absolutely destroyed and become shells of people due the worry of raising a child/young adult with such complex needs.

I dont think any parent should be forced into the decision to go through with that. Down syndrome is a spectrum, and some individuals will have amazing lives and be an absolute joy for the parents to raise, some wont. I think it's fair that parents get to choose not just whether they want to take a risk, but whether or not they deem themselves actually able to meet the demands of a high needs child.

@Covidworries

Its symantics really. Pretty much no one has said abortion should be baned. No one has said that for life limiting reasons that late term abortion should be stopped.

The issue is that DS alone is considered reason enough, or club foot, cleft lip etc.
In reality, i doubt that anyone would abort at 38 weeks for a fetus missing a finger. And the families who have to go through a late stage abortion it must be agony and devistating.

But the cleft lip or DS alone isnt reason to day a child isnt viable. The child may have other health implications intop of the cleft lip, club foot, DS which makes it life limiting. But imagine saying fetus with black skin can be aborted after 24 weeks because some black fetus are more likely to have kidney failure. In this instance the fetus isnt aborted for being black its aborted for kidney failure. A really bad example but if it was skin colour there would rightly be outrage.

You keep saying DS isn’t enough on its own, but you can’t know that. That’s why it is listed. Also I highly doubt that anyone is terminating at 24 + weeks over a club foot so that’s a total straw man. But if I believe (and I do) that a woman has the right to terminate if she wants to even if it’s 100% healthy, then I have to afford that same freedom to someone with a disabled child.

The case was whether a condition such as Down syndrome should be on the list as exempted from the 24 week cut off for abortions. The petitioner lives independently and cannot see why someone such as herself she be treated as so worthless they can be aborted up to birth - and I for one agree with her, I am pro abortion but uneasy about the 24 week limit let alone later unless the condition is diagnosed late, perhaps then a 2 week window can be given

@Covidworries

Its not manipulation. In most cases DS is screened initially at 12 week scan and people are offered extesive screening if fetus classed as probably DS. All this is done in almost all cases well before the general abortion cut off of 24 weeks.

The law already protects life limiting health problems that can be terminated after 24 weeks if needed.

What they are asking is that abortion after 24 weeks for DS (unless other life limiting health problems) is stopped in line with non DS pregnancies. Drawfism, missing limbs arent reasons that allow abortion after 24 weeks so why DS?

I have a dd missing her hand and I know people who were offered late abortions (in one case they said they were pressurised quite hard and told it was"almost certain" that there would be other issues as well, when in fact it's very unusual for there to be further problems) due to that. It's a relatively minor disability and I don't think late abortion should be offered for that.

You still need two doctors to approve an abortion don’t you? The idea that women just waltz in for a late-stage abortion and get it, no questions asked is a bit ridiculous.

As previous posters have said there is such a spectrum. Also I know several people with DS who can read and write and have jobs. They have some independence but they still need daily support. Their parents are still looking after them into their 50s/60s/70s. Not with eating or washing but general support like paying bills or taking them to hospital appointments. Or emotional support, they don’t always understand situations with work colleagues or friends/family. It’s not 24/7 care but they rarely get a day off either.

For what is worth, I wouldn't say Heidi has necessarily been manipulated. She has been brought up in a family that doesn't agree with abortion - her mother didn't have any antenatal screening tests as she didn't see the point, she intended to continue the pregnancy regardless. All her life, Heidi will have been surrounded by the message that she is loved, valuable, and would never have been aborted. It is a nuanced message - her mother wouldn't consider abortion because of her faith and her beliefs - and from that, Heidi has little concept of how other women would react if a screening shows an abnormality such as DS. Her mum didn't have the screening and then decide to continue, she never knew she was carrying a child with DS.

So for Heidi, with a church community around her that shares her parents' views, it makes sense that she would hold those views too more than likely. And they are reinforced by her husband and his family, and her own Christian relatives. Heidi also doesn't have to worry that she will be in a similar position to her mum, or other women, because her husband has had a vasectomy. Children are not in her plans.

Adding to that a family who are heavily involved in local politics and have a platform for campaigning, she has had the opportunity to develop a platform to campaign on this issue. Interestingly her political family are not right wing. Her brother is a socialist who stood for election locally. They are good people (one of her relatives was my very good friend at primary school years ago) and I can understand why Heidi feels so strongly about this, because it's personal to her. I disagree fundamentally with her though on this - because the rights of the woman have to be paramount until birth.

I sadly sense that a lot of posters in this comment sections don’t understand how bad DS can actually be.

@JacquelineCarlyle

As early as possible, as late as necessary for all women in all circumstances - necessary to be determined by the pregnant woman only. If it's not inside your body, then you shouldn't get any kind of say.

I really struggle with this viewpoint, on one hand many women struggle with the concept of the 'missing girls' who were aborted due to sex selection (around 45 million) and how it is a reflection of how females are viewed and then many of the same women will say that any termination at any point is completely acceptable and that no one should have a viewpoint.

It is so complex and I agree with a pp who says that the law has not yet caught up with medical advances.

(I wasn't particularly aiming this comment at the poster I quoted, just more general musings)

@owlbethere

I agree with you about the right of abortion. Im no where saying im against abortion. But i do understand where they are coming from in there shouldnt be a difference between healthy/no known disabilities and known disabilities. If this means removing the 24 week limit for all then I could support this. And doubt anythingnwould change on numbers if this happened.

Life limiting / non viable is a whole other situation that needs more support and awareness.

This thread has been so insightful and has made me remember that its not just data but real people

@Staryflight445

I sadly sense that a lot of posters in this comment sections don’t understand how bad DS can actually be.

Indeed, Heidi and the young man who plays Alex in Coronation Street are in no way representative of the majority.

As early as possible, as late as necessary, for any woman, for any reason.

@GingerScallop

Those saying Heidi has been manipulated can you please offer your basis? How did you come to this conclusion? or is it an assumption because she has DS? I applaud her (whether I agree or not) because she's sparked a much needed debate about the value of life of persons with disabilities and it's a debate we need to have especially given our talks and commitments to disability rights

I said I think she's been manipulated. She's intellectually compromised and supported by pro life groups because let's face it, having a woman with downs who is married as the face of your campaign is really powerful.

Not a single pregnancy has been terminated past 24 weeks for downs in 10 years. So it's a court case about an issue which doesn't happen. It could, but it doesn't. Women aren't terminating pregnancies where the foetus can live independently because it has Downs.

The people supporting and funding Heidi don't care especially about people with downs. If they did, they'd probably reassure Heidi that there isn't a campaign to rid the world of people like her.

This is a blatant attempt to roll back abortion rights. I would fully support Heidi if she was pushing for the right of women to terminate up to birth for any reason.

The sad thing is a lot of the women choosing to abort after 24 werks will have initially chosen to keep their babies until the full extent of the health conditions were known. Not all babies ' just have down syndrome' there are a lot of conditions also associated which lead to some babies living very short, miserable and painful lives.
We also never see the people who have down syndrome who've developed early onset dementia, the ones who also have Autism alongside or heart conditions which they have to live with without fully understanding. Or the ones who have horiffic, violent outbursts and behavioural problems being paraded about to make mothers who make different choices feel guilty.

@MyPatronusIsACat

I am glad they ruled against her. She had no right telling other people what to do with their unborn child.

100% this.

I couldn't understand why this was even a thing when i saw it on the news this morning.

Having an abortion is between a woman and her doctor.

I'm sure the campaigner is very nice but what gives her the right to make life changing decisions for other women?

As a person who has had to make the awful decision whether to Terminate a pregnancy past 24 weeks not due to DS i am pleased that she did not win her case.
Nobody takes the decision to have a tfmr easily especially past 24 weeks when you can feel your baby moving and kicking.
I would have worried how far they would have taken the banning of terminations past 24 weeks for certain disabilities.
As for the question of does the baby feel pain that was the one thing i asked the professor to make sure didn't happen i asked him to make sure that my baby wasn't poked or prodded as the injection to stop his heart happened.

@Just10moreminutesplease

Surely the issue is equality? Either abortion should be allowed at any stage regardless of reason, or it should be 24 weeks for all babies that are viable?

Having a different rule when ds means that foetuses with ds are afforded less rights than those without.

I think this is it.

Frankly I think abortion should be available for all, up to term.

It's not a nice thought. I can see why it would be painful for some to imagine. But it's not their choice. It's the choice of the woman going through that.