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

[hyperbyke]

What happened to you was horrible but I don't think it necessarily means the whole system is corrupt.

[Tumbleweed101]

I'm pro-choice and a decision I would have made in my 20's is different to one I would make now in my 40's if I ended up pregnant now with a child that would be disabled. The mother knows what she can cope with and the life and support the child would get.

[456iamherestruggling]

I wish I was given a better understanding in my consultation I had a termination at 26 weeks for what I now understand to be learning difficulties which at the time the doctor did not explain in that manner. She kept re-iterating that my baby’s condition would affect his ability to walk, talk, see, hear, sit up and swallow. She did not explain that this could be in a mild scale and he would be able to do those things it just may take longer it was all medical formal terms and she just kept repeating what he would not be able to do. I was extremely emotional as all I took in was - brain damage - what he would not be able to do. He also measured very small and my placenta was restricted so she was Adament he would not make it to term or would die in labour with all of this said I chose to end against my better judgement I did not want him suffering. I was never explained it was illegal at my stage and the reasons why. My baby was big enough to of just been delivered as a preemie and be given a fair shot the consultant knew this was Wrong and could see I was lost my mother was very controlling and led the choice to stop, and never once stopped to ensure I know what was happening. I had no counselling and now have been left with depression social anxiety ptsd and suicidal thoughts. The system is corrupt

[Enough4me]

@456iamherestruggling, that sounds like a horrendous experience and I hope that you can access therapy and support

The experience I have had with knowing someone with Down Syndrome is different to the happy smiling children I have seen on the TV. The person I know is mid-late 30s, no independence, has anxiety, repeats the same sentences, moves and hides things if he doesn't like them (random small items), doesn't relax in social settings and removes clothes and gyrates (large man so takes some explaining if DC around). His parents are pensioners, and at some point my friend will become his carer and her DS will have less attention. It hasn't been easy or particularly fun along the way for any of them. I know it's a spectrum, so others will have independence and more relaxed life, but how would the woman/couple know and if there are other siblings they have to think about them too.

[456iamherestruggling]

I am pro choice however I had a tfmr post 24weeks but I wish the 24 week limit applied and was set. I was advised that the consultant would support a termination the language used and the way the information was given to me made me feel that she was suggesting this almost as if it was in my babies best interest. Further to this I panicked during the procedure and begged them to stop, buy my mother said I was fine and they must continue and they went ahead based on her word not mines. This took place with 4 adult medical professionals in the room to witness how distraight I was and thay I begged to stop. FoRCED. I was too frightened and overwelmed to fight. My medical notes did not match the information I was given in my apppiontment, which made me feel targeted as it was all doom and gloom however the notes where full of options and potential promise. Whilst I blame myself for not doing more research unfortunately I just accepted that I was losing my baby and gave up, I do feel that the consultants should be also held accountable. I later discovered that my babies condition was not to the severity I was lead to believe under the grounds the termination was offered. Also my baby was at a stage where he was able to be delivered and survive so simply the option should not of been given. I was not given any counceling before going ahead or explained the legalities nothing at all. I was scared vunrable full of hormones and feeling like my body was responsible for my baby suffering which would ultimately result in his death and at the time felt it was not fair to allow him to suffer. If the time limit was set this would not of happened. Failing this there needs to be more clarity of what is deemed severe should you still be able to end a pregnancy post 24 weeks, as the reality is this is a very grey area and often down to the consultant you deal with's personal opinion. I have heard of many women who have had much more severe diagnosis than me and their consultant refused to allow for a termination post 24 weeks. The whole system needs changing and they need to start with stop offering to end a pregnancy allow the women to ask if that what they want, stop using gentle language say what it is 'an abortion' (whilst I never say thats what I have done I hate that word but that is the reality) have clear cut definition of what is deemed severe if post 24weeks. Councelling should be compolsury before going ahead to ensure the women/couple understand their diagnosis completely, the process of termination what will come after (arranging your babies funeral) potential PTSD, mental health issues and so on.

[456iamherestruggling]

I am pro choice however I had a tfmr post 24weeks but I wish the 24 week limit applied and was set. I was advised that the consultant would support a termination the language used and the way the information was given to me made me feel that she was suggesting this almost as if it was in my babies best interest. Further to this I panicked during the procedure and begged them to stop, buy my mother said I was fine and they must continue and they went ahead based on her word not mines. This took place with 4 adult medical professionals in the room to witness how distraight I was and thay I begged to stop. My medical notes did not match the information I was given in my apppiontment, which made me feel targeted as it was all doom and gloom however the notes where full of options and potential promise. Whilst I blame myself for not doing more research unfortunately I just accepted that I was losing my baby and gave up, I do feel that the consultants should be also held accountable. I later discovered that my babies condition was not to the severity I was lead to believe under the grounds the termination was offered. Also my baby was at a stage where he was able to be delivered and survive so simply the option should not of been given. I was not given any counceling before going ahead or explained the legalities nothing at all. I was scared vunrable full of hormones and feeling like my body was responsible for my baby suffering which would ultimately result in his death and at the time felt it was not fair to allow him to suffer. If the time limit was set this would not of happened. Failing this there needs to be more clarity of what is deemed severe should you still be able to end a pregnancy post 24 weeks, as the reality is this is a very grey area and often down to the consultant you deal with's personal opinion. I have heard of many women who have had much more severe diagnosis than me and their consultant refused to allow for a termination post 24 weeks. The whole system needs changing and they need to start with stop offering to end a pregnancy allow the women to ask if that what they want, stop using gentle language say what it is 'an abortion' (whilst I never say thats what I have done I hate that word but that is the reality) have clear cut definition of what is deemed severe if post 24weeks. Councelling should be compolsury before going ahead to ensure the women/couple understand their diagnosis completely, the process of termination what will come after (arranging your babies funeral) potential PTSD, mental health issues and so on.

[ArcheryAnnie]

@easterndreaming

I just wanted to say that this is such an important subject, and I have found this thread very informative. It's important to be able to discuss issues that often are not spoken about. I can understand why, they are things that scare us and it is easier to not speak of them, but just because they scare us it doesn't mean they don't happen and for the women and families that have to face them, well that's their reality, they can't turn a blind eye to what is happening, whether that be the termination of a pregnancy or the realisation that the family you have will inevitably change life in an unimaginable way. It's essential that we keep listening to differing opinions, otherwise we will fossilise in our thoughts, and be less able to connect with the people around us. Thank you to everyone who has shared their stories.

Hear, hear.

Thank you everyone on this thread, whether you've shared personal stories or information about the law, or about procedures.

[Suzy39]

Yes, i shared some intimate medical details of my TFMR. You are welcome

[Lockdownbear]

@HappyHippoWhatAMess

I also work in this space, and find the debate about 24 weeks as a limit often glosses over some of the real medical complexity in these cases. I think it is a disservice to the mums who have to make these decisions to present a foetus at 24 weeks as being fully developed- it isn’t and there is an awful lot of development that needs to happen between 24 weeks and term. A problem can be found on the 20 week scan- for example a congenital diaphragmatic hernia- but the extent of its effect on the foetus not known until you can track the lack of lung growth in the subsequent weeks. If you get to 32 weeks and find that your baby won’t have enough lung tissue to breathe, the least we can do is give a mother options on how she wants to proceed, including options which limit any damage to her and her future fertility. (Apologies for typos I’m trying to breast feed with the other hand!)

I hope all mums (dad's & family) that have gone through that are given tons of support.
Clinging to hope your baby is going to be OK, only to get to 32 weeks to get told sorry.
Nobody would take that decision lightly, ever!

[sashh]

@Balonzette

The idea that a baby can be aborted up to birth is absolutely horrifying.

What I find horrifying is that we can't detect some abnormalities that are incompatible with life until so late.

Getting a diagnosis at that late stage must be horrifying for the parents.

@Suzy39

Please go away. Some very brave posters are sharing intimate medical details in order to add to the debate, they should be applauded for that not talked down to like you are some kind of stuffy head teacher.

Ladies thankyou for sharing your experiences, I know it can't be easy.

[HappyHippoWhatAMess]

I also work in this space, and find the debate about 24 weeks as a limit often glosses over some of the real medical complexity in these cases. I think it is a disservice to the mums who have to make these decisions to present a foetus at 24 weeks as being fully developed- it isn’t and there is an awful lot of development that needs to happen between 24 weeks and term. A problem can be found on the 20 week scan- for example a congenital diaphragmatic hernia- but the extent of its effect on the foetus not known until you can track the lack of lung growth in the subsequent weeks. If you get to 32 weeks and find that your baby won’t have enough lung tissue to breathe, the least we can do is give a mother options on how she wants to proceed, including options which limit any damage to her and her future fertility. (Apologies for typos I’m trying to breast feed with the other hand!)

[LangClegsInSpace]

[quote Mjfdrjjbf]@LangClegsInSpace

“Removing the time limit would not be just to set some sort of example, it would be to safeguard women's current abortion rights while preventing discrimination against disabled people.”

I’m assuming for this to happen it would be an issue for parliament rather than the courts though? I can’t see this government (or frankly any government) going for that.

I think the best we can hope for is that the law remains the same but the case has gone some way to highlight some of the issues felt by people with disabilities and their families.[/quote]
Yes, it would be a matter for parliament.

If the next court decided that removing the time limit was a less intrusive way of protecting women's bodily autonomy, thus reducing indirect disability discrimination, they could make a declaration that the current law is incompatible with the European Convention on Human Rights.

The government does not have to act on this and the court has no power to change the law. The declaration is basically the court saying to the government, 'we think this law is incompatible with human rights so you might want to change it. Otherwise, if it goes to the European Court of Human Rights, here is why we think you might lose'

It's rare that the courts make a declaration of incompatibility and it's considered to be a last resort. The court must first see if there's any way at all of interpreting the law as it is in a way that's compatible with human rights.

Not sure how it would work out if the court decided the only way to comply with human rights law was to remove the time limit.

I don't think anyone's actively campaigning for removing the time limit at this point but there's a chance it could come down to either that or a reduction to 24 weeks for all pregnancies. Or no change. Court judgments can be very unpredictable, and moreso the higher up you go.

[Mjfdrjjbf]

Actually I’m probably slightly misrepresenting that - the 60% of DS diagnoses a which are postnatal is only live births. If you include all pregnancies with DS that figure would likely drop, although I’ve no idea by how much.

[Mjfdrjjbf]

@olivehater - that makes sense. Thanks. Not offended

[Mjfdrjjbf]

“then realise that Downs is a lot more complicated than they thought.”

Down syndrome in that specific case Is more complicated than they thought. 60% of DS diagnoses are postnatal. It’s not the norm to find major problems during the 20w scan. Someone up thread noted 50% of babies have congenital heart problems but only around 10-15% require surgery; the rest will be minor (eg small holes that self resolve)

I know I sound like a broken record and I don’t think DS is all roses, but it also very often doesn’t cause the problems that are often portrayed as being inevitable

[olivehater]

I was just attempting to explain why we might pick up DS later and why those that we do pick up later might be on the more sever end of the scale and have more complex abnormalities which might cause someone to evaluate whether they would consider a termination. I did not mean to cause offense.

[Lockdownbear]

@Mjfdrjjbf I think what she is saying is mums may refuse the chromosome tests, then get to the 20 week scan (not always on time). Get told there are heart issues and then realise that Downs is a lot more complicated than they thought.

No disrespect to anyone but sometimes I think people forget that scans are a serious medical check, they aren't just about having a wee peek, and getting to know if it's a girl or boy.

So while they might refuse bloods they won't refuse the scan. So people may well get told about potential issues at the scan which then gives them second thoughts.

[Mjfdrjjbf]

@LangClegsInSpace

“Removing the time limit would not be just to set some sort of example, it would be to safeguard women's current abortion rights while preventing discrimination against disabled people.”

I’m assuming for this to happen it would be an issue for parliament rather than the courts though? I can’t see this government (or frankly any government) going for that.

I think the best we can hope for is that the law remains the same but the case has gone some way to highlight some of the issues felt by people with disabilities and their families.

[Mjfdrjjbf]

@olivehater

* The screening for chromosome abnormalities is earlier. But occasionally you get people that initially refused screening but when faced with say a heart abnormality decide they need screening such an amnio. So you are picking up DS with extra complications.*

I might be being overly sensitive here, or the way you’ve worded this might not be quite how I’m interpreting it… but there is a suggestion that if only parents had known about DS earlier they’d terminate, not that the problematic factor - for parents who’ve refused screening and so have taken an active decision that they’d be comfortable parenting a child with T21 - is complex abnormalities that might be found at the 20w scan, rather than DS per se.

Parents coming up against these attitudes creates a distrust between parents of children with DS and clinicians, and is at least part of the reason why this case has been brought in the first place.

I got turned away from A&E with my child because the doctor felt I “was still coming to terms with the T21 diagnosis” and so rejected my legitimate concerns. I had to go back after shift change over to get emergency care for her. This stuff isn’t just an issue in maternity care, it becomes diagnostic overshadowing etc later on.

[easterndreaming]

I just wanted to say that this is such an important subject, and I have found this thread very informative. It's important to be able to discuss issues that often are not spoken about. I can understand why, they are things that scare us and it is easier to not speak of them, but just because they scare us it doesn't mean they don't happen and for the women and families that have to face them, well that's their reality, they can't turn a blind eye to what is happening, whether that be the termination of a pregnancy or the realisation that the family you have will inevitably change life in an unimaginable way. It's essential that we keep listening to differing opinions, otherwise we will fossilise in our thoughts, and be less able to connect with the people around us. Thank you to everyone who has shared their stories.

[LangClegsInSpace]

Thank you for your work, olivehater, you do a tremendously difficult and important job

To be clear, this case was not about increasing the legal termination for healthy foetuses. The claimants sought to decrease the time limit for terminations where the foetus has medical problems likely to result in serious disability.

The reason these additional questions have been raised is because of how the claimants framed their arguments around disability discrimination.

The judge rightly dismissed the claims of direct discrimination. A foetus does not have personhood, does not have human rights and cannot bring a discrimination claim.

But they also claimed that having different time limits affects attitudes towards all disabled people, sending the message that their lives are worth less. They argued that this constitutes indirect discrimination towards all disabled people, who obviously do have full human rights.

The judge also rejected this argument because the claimants had failed to show a direct link, but went on to say that even if there was a link that showed indirect discrimination it would still be lawful because it was a proportionate means of achieving a legitimate aim.

As the judge outlined at 113:

If we reach the stage of justification and must assess the proportionality of the measure, it is common ground that the well-known four stage test applies:

(1) Is the aim or objective of the interference sufficiently important to justify the limitation of a fundamental right?

(2) Is the interference rationally connected to such aim or objective?

(3) Could a less intrusive measure have been used?

(4) Having regard to these matters and to the severity of the interference, has a fair balance been struck between the rights of the individual and the general interests of the community?

If the time limit was removed then this would undoubtedly be a less intrusive measure. Especially as nobody would use it anyway. It would be completely unobtrusive.

This is the weakest part of the claimants' argument and the weakest part of the judgment because the judge just skipped over it and ruled that the current law struck a fair balance.

The claimants are going to appeal and they won't appeal on this point, obviously, because they don't want the time limit to be removed. However, they may well lose on this point if it's well argued.

Removing the time limit would not be just to set some sort of example, it would be to safeguard women's current abortion rights while preventing discrimination against disabled people.

[thesearelaughterlines]

@Suzy39 you are being totally cruel insensitive and downright nasty

It's not rocket science .. terminations are done medically and surgically
Why don't you just go away

To all of you ladies who are affected in your own individual way by this thread , I send you a virtual hug

[ISpyCobraKai]

It'll always happen, I'm not allowed to feel ok about it.
It wasn't a situation I wanted to be in, the procedure wasn't fun, but I have no regrets.

Someone will always want me and others in the same situation to beat themselves up about it forever.
The mad thing is, at first, I felt guilty for not feeling guilty

[olivehater]

Suzy is there any need for that kind of language? I think I spy knows what happened to here.

[ISpyCobraKai]

No I didn't have a cesarean either.

I'm well aware how it was taken away, I experienced it but thanks for that.
Any more guilt trips?