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

A simplistic way of looking at it but, in essence, most babies would, at the 24 week mark, have the right to be cared for by their local authority (as opposed to their mother having a right to terminate) if the mother was not able to care for the child. I am not sure why a baby should be denied this right because they have Down’s syndrome.

@pointythings agreed, and the prevalence of early onset dementia is the thing that upsets me most when I think about my child’s future. But I have no idea what advancements will be made in dementia prevention and care in the next 40 years as it’s a very well funded area of research, plus I’ve got a hell of a lot of amazing and rewarding times to get through with my child before we have to worry about that. Im not pretending it’s all rosy but there’s also a bigger picture

@Teapiggies positiveaboutdownsyndrome.co.uk/nobodytoldme/

@Teapiggies - also, a note on NIPT!

I don’t agree NIPT should be further restricted as I think restricting info about a woman’s pregnancy is a bad thing. But 2 important points - it’s still only screening, not diagnostic and is only 50% accurate for women in their 20s (more babies with DS are born to women under 35 than over 35 due to higher birth rate in that group, so this is relevant.). Plus, a woman may well be happy with a DS diagnosis but not with anomalies that show up later in the 20w or later scans. I don’t think NIPT is the panacea some people think it is.

It’s all a bit of a minefield. But the more that’s acknowledged the better!

@Mjfdrjjbf it’s a lovely book, but it isn’t exactly ‘balanced’ information so to speak.

The thing is, nobody can tell a woman how her baby with DS will fare in life, medically or socially. It seems the level of medical issue don’t necessarily correspond to the level of social function, so it’s all just a waiting game. Some women will be happy to see how things go & think optimistically. Others won’t be comfortable with such an unknown. I doubt ‘balanced information’, in whatever format that takes, would radically change the termination rate because it wouldn’t provide enough reassurances for those women who are risk averse. But that’s just my hunch, I could well be wrong.

only 50% accurate for women in their 20s

Are you sure??? That doesn’t sound right to me at all?

@Teapiggies

Many parents of DS children have been hurt and saddened by this and what it says about society's attitude to their children.

But this isn’t about society’s attitude to their children, is it? It’s about other women and their potential children.

If it was truly about bringing the termination gestation limit in line with one another, they should campaign for routine NIPT testing for all pregnant women who want it. That way there will be much fewer late diagnoses and women will have the opportunity to terminate early if they want to.

But something tells me they won’t.

Heidi Crowter was also involved in the 'Don't Screen Us Out' campaign against NIPT.

Sorry it’s taken me a while to respond. Doing dinner & bedtimes, and spider clearance..

Clymene “The average intelligence quotient (IQ) of children with DS is around 50, ranging between 30 and 70. Remarkably, a small number of patients have a profound degree of ID, whereas others have a mild degree” this is from Mégarbané, A. et al, 2013 The intellectual disability of trisomy 21: Eur J Hum Genet.
Mild learning disability is usually used to describe an IQ of 50-70, moderate is 35-55. IQ measures generally are tricky in this population though, not least due to verbal components of the tests -verbal functioning is commonly affected in DS, but not just as a result of cognitive ability but also hypotonia and differences in facial structure - that basically make talking more difficult.

To pick another example from your account of DS - yes, around 50% of children with DS have congenital heart problems but most can be treated (if needed) within the first years of life - my daughter is in that 50% and though when she was very small, her heart defects affected her ability to feed, they resolved without treatment by the time she was 3. In our local DS group, none of the children have ongoing heart problems and a couple needed surgery in the first year of life, which went well. Of course that’s not true for everyone, but still, that 50% stat is not as scary as it first seems.

To the couple of people picking up on my mentioning the 90% overall abortion rate for pregnancies identifies as high risk for DS - It’s difficult to know the quality of info that people base their decision on. It is a painful and difficult choice to have to make, whatever you decide. The information I was given by the screening team and my doctor was great; balanced and compassionate, and I still went backwards and forwards about what to do. I would not condemn anyone for choosing to terminate in those circumstances. But my experience of being given decent info is (anecdotally, from other parents in the DS community) not common. More than that, most parents were repeatedly asked to consider termination even after they stated they’d made a decision to continue with the pregnancy. So, yes, a lot of parents in the DS community feel that people don’t have access to accurate information. Of course people can do their own research, but it’s an emotional and overwhelming time and not easy to do a deep dive into the research.
If termination rates stayed at 90% even if good quality information was routinely available, I’d be surprised but rest a lot easier than I do now.

@Teapiggies - no it’s not particularly balanced, but my point is that the information that’s given at the moment isn’t balanced. Frankly I’m not that invested in whether more babies are born with DS, but I do think that an overly negative and medicalised view needs countering. One thing I’ve really noticed over the last few weeks is every time someone with a family member with DS says it’s been a positive experience, lots of people jump in and tell them their lived experience must be the exception. From knowing lots of families with DS if that’s the case I’m meeting a hell of a lot of exceptions.

On NIPT: www.downs-syndrome.org.uk/wp-content/uploads/2020/08/2020.FactChecker_NIPT.pdf

I’d be interested in finding the source data (I can’t remember where I originally read it) but DSA have it at less than 50%

@cloudacious

motor but this option is never used anyway, it just uselessly exists causing pain to those who have it hard enough. If it's never used, it's not undermining anyone's rights to remove it or level up.

What do you mean it's never used?

There isn't a separate specific rule for DS. There isn't a list of conditions.

The law says abortion past 24 weeks is legal if 'two registered medical practitioners are of the opinion, formed in good faith, that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.'

Just because it hasn't been used for DS for a good few years doesn't mean it's never used. Of course it would undermine women's rights to remove it.

@Mjfdrjjbf I just wanted to say hello :)

I find the anti-NIPT campaign even more incomprehensible than this one if I’m honest. I can somewhat understand why they feel the way they do about the termination laws (although I disagree), but to want to prevent women even having knowledge about their own pregnancies?! What gives them that right?

I also struggle because a lot of people who are anti-NIPT actually received a postnatal diagnosis after having the first trimester screening themselves. Why is it they feel they had the right to testing (even if it didn’t produce an accurate result for them), but other women don’t?

It all seems to be on morally shaky grounds.

Following up on the NIPT comments - I had a NIPT but was advised to have a diagnostic test (CVS) as the NIPT is not considered conclusive

I know I'll get jumped on, but I agree with her. I also totally respect everyone who disagrees as we are all allowed our opinions

[quote Mjfdrjjbf]@Teapiggies - no it’s not particularly balanced, but my point is that the information that’s given at the moment isn’t balanced. Frankly I’m not that invested in whether more babies are born with DS, but I do think that an overly negative and medicalised view needs countering. One thing I’ve really noticed over the last few weeks is every time someone with a family member with DS says it’s been a positive experience, lots of people jump in and tell them their lived experience must be the exception. From knowing lots of families with DS if that’s the case I’m meeting a hell of a lot of exceptions.

On NIPT: www.downs-syndrome.org.uk/wp-content/uploads/2020/08/2020.FactChecker_NIPT.pdf

I’d be interested in finding the source data (I can’t remember where I originally read it) but DSA have it at less than 50%[/quote]
What information is given at the moment? Do we know?

I am usually very pro choice but how can you abort up to delivery? I honestly don’t understand this. Surely it would be better to give birth and then give up care? How do you abort a full term baby?

The Anti NIPTers I know aren’t so much against early screening as against early screening when poor info is given about the screened-for condition.

@Spink

The Anti NIPTers I know aren’t so much against early screening as against early screening when poor info is given about the screened-for condition.

I can’t help but feel anti-NIPTers are assuming the information is ‘poor’ because it isn’t producing the results they personally want to see. It doesn’t work that way. Even if the information is poor, that shouldn’t enable people to make decisions about whether a pregnant woman can have knowledge about her pregnancy or not - that’s incredibly controlling.

@Teapiggies There is no standardised info given. DS organisations have supported training in this in recent years - as Mjfdrjjbf described, talking in terms of chance vs risk etc., but it just seems to depend on the individual views of the clinician(s) you see

@Teapiggies I agree. Yes to screening options and pregnancy choices AND yes to better and more consistent info giving

@Teapiggies sorry / I don’t agree with the bit about “assuming” poor info is given though. As I’ve said, im not aware of data on the quality of info given but obviously those of us who have children with DS compare our reality with what most of us were told would happen.

Less than a quarter of women who find out that their baby has a congenital condition terminate their pregnancies.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachmentdata/file/1008030/NCARDRSCongenitalanomalystatisticsreport2018.pdf

I'm glad your children are well and happy @Spink and @Mjfdrjjbf

@Krabapple

I am usually very pro choice but how can you abort up to delivery? I honestly don’t understand this. Surely it would be better to give birth and then give up care? How do you abort a full term baby?

I an only imagine things would have to be desperate for someone to terminate at almost term. It could be the mums had some sort of infection or something that's caused issues. Or possibly the baby having a stroke or something.

One things for sure it wouldn't be an easy decision.

@Teapiggies I agree information about women’s pregnancies/health should absolutely not be restricted. It’s also worth acknowledging there’s a lot of money in NIPT, so I’m not sure it’s always quite so straightforward as anti-NIPT=anti-choice. But there are definitely anti-choice people in the DS community and I strongly disagree with them.

[quote Spink]@Teapiggies sorry / I don’t agree with the bit about “assuming” poor info is given though. As I’ve said, im not aware of data on the quality of info given but obviously those of us who have children with DS compare our reality with what most of us were told would happen.[/quote]
Of course, that’s the issue, I think there definitely needs to be a standardised pathway of information rather than an ad hoc approach. Perhaps this should be the focus rather than termination laws.