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

@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 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.

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.

“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 - that makes sense. Thanks. Not offended

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.

[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.

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!)

@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!)

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!

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

@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.

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.

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, 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.

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

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.

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