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

But yes there is testing for down syndrome so you can avoid "that" specific DS journey thru testing and termination if you wish. But you cannot test for every similar or worse condition.

Not only that @Pongo101 but the NIPT and similar can't test for many things.
My NIPT came back fine. My baby still had deletions of chromosomes that meant he was incredibly poorly. We had an amnio but it's why we didn't end up finding out the issue until 22+4.
So lots of people would end up being close or after the 24 weeks.

I know that's not DS but I think its relevant when people keep saying you can find things out easily early on.

People on this thread are going on as if women given the chance would have terminations past 24 weeks left right and centre.

An abortion past 24 weeks involves a traumatising still birth and the people who make the difficult decision to do this often do so to stop their very much wanted child having a short and brutal èxistence filled with pain.

*@Mjfdrjjbf * honestly it would be so great if you could speak with Heidi and her team. Because you see it with such clarity and compassion.

@Pongo101

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.

I thought they were offering NIPT on the NHS now. Is Harmony something different?

(I agree anyway because as time goes on there will be advances in other types of early screening and they are bound to be available privately first.)

@Embracelife I know it’s a bit of a technicality but there’s screening for DS early in pregnancy, not diagnostic testing (NIPT is also screening not diagnostic). Around 12% of babies born with DS had low chance screening results. And another 40-50%’s mothers opted out of screening either at the start of didn’t go forward with a diagnostic test having had a high chance result (over 1 in 150).

It’s important because there’s a risk DS is framed as a lifestyle choice, which I would then be worried is used an excuse to not fund services properly.

Thanks @pointythings. I do understand why many people in the DS community feel so strongly about it, particularly those who’ve had appalling antenatal experiences and feel they had to fight against repeated pressure from clinicians to terminate. I’m lucky I didn’t have to go through any of that with a postnatal diagnosis. It’s not black and white.

I’d strongly push back against people who say “why would someone not want my baby” though. It’s not about my child. No one can have her - she’s mine, and I feel incredibly lucky that she is. My bigger concern is the unintended consequences that would have impacted people on this thread who’ve shared their stories of TFMR.

Any pregnancy can also end in a mother having disabilities she didn't have before, and not enough is talked about that.

Yes, I was just thinking about this in relation to my earlier post about the criteria for abortion before 24 weeks.

Being denied bodily autonomy is always likely to be injurous to women's mental health.

Full term pregnancy and childbirth is much more likely to be injurous to your physical health than ending a pregnancy in the early weeks.

Two medical practitioners must decide if the continuance of your pregnancy would involve risk, greater than if the pregnancy were terminated, of injury to your physical or mental health.

In the early weeks of pregnancy that's a no brainer.

No one can have her - she’s mine

Thank you for your very thoughtful posts

There's a wish list of what we need, isn't there:

• Retraining of clinical staff so that they trust women to decide and stop pushing for termination after they have heard 'No'.
• Better support in every way for families who have a child with disabilities of any kind
• More visibility in the wider community so that the stigma is addressed
• Levelling up of the age where termination is allowed - because let's be honest, it isn't going to change anything. No women is just going to have a termination at 38 weeks for the lolz

What we don't need are restrictions pushed by someone who has people with an agenda behind them.

*- Retraining of clinical staff so that they trust women to decide and stop pushing for termination after they have heard 'No'.

• Better support in every way for families who have a child with disabilities of any kind
• More visibility in the wider community so that the stigma is addressed
• Levelling up of the age where termination is allowed - because let's be honest, it isn't going to change anything. No women is just going to have a termination at 38 weeks for the lolz*

YES YES YES. Everything in this post. This all would make the world a better place.

@LangClegsInSpace harmony isn't available on the NHS unfortunately, it's a combination of a detailed private scan and from my understanding (not a scientist so can't say exact how the blood test works) analysis of the baby's dna in the mothers blood. So you can tell the chromosomes from the test.

Good wish list.

I would add, better support for adults with disabilities of any kind.

This is an unusually reasonable and productive thread for AIBU!

It also claims 99% accuracy

@Pongo101 it’s being brought in in some Trusts. But see previous posts, more info is good but it’s definitely not the answer to everything for lots of reasons

This is the NIPT offered by NHS:

www.nhs.uk/pregnancy/your-pregnancy-care/screening-for-downs-edwards-pataus-syndrome/

I love @pointythings list and @LangClegsInSpace addendum. That would truly be a positive step forward.

I had to pay for my NIPT in 2018. I hope it is freely available now. Even though there was a problem identified and we had it through the NHS we still had to pay. Not cheap either.

Looks like it was rolled out to all areas of England by July this year -

phescreening.blog.gov.uk/2021/07/01/nipt-rolls-out-to-all-areas-of-england-as-part-of-the-existing-nhs-screening-pathway-for-downs-syndrome-edwards-syndrome-and-pataus-syndrome/

That's brilliant!

I don't know about Harmony but I definitely had bloods to check for various things including spina bifida.

It has crossed my mind to about women who's pregnancy could be putting their own life at risk too.
Beyond 24 weeks I imagine in most cases the baby would be delivered and given its best chances in an incubator.

Which is possible why 24 weeks is given as the last date for a healthy baby to be terminated.

Great news that these tests are now being covered!

Even with having the testing though there too often seems to be a stigma around it and an idea people shouldn’t want to know

[quote Mjfdrjjbf]**@Embracelife* I know it’s a bit of a technicality but there’s screening* for DS early in pregnancy, not diagnostic testing (NIPT is also screening not diagnostic). Around 12% of babies born with DS had low chance screening results. And another 40-50%’s mothers opted out of screening either at the start of didn’t go forward with a diagnostic test having had a high chance result (over 1 in 150).

It’s important because there’s a risk DS is framed as a lifestyle choice, which I would then be worried is used an excuse to not fund services properly.[/quote]
Good point.
The nipt pathway mentioned
Is only after high chance..so some could slip through.

"
All women in these areas who have a combined or quadruple screening test taken on or after 1 July 2021 and receive a higher chance result now have a choice of:

no further testingNIPT screeningprenatal diagnosis (PND)

But again
There are many other deletions and rare conditions which won't get detected prdnatalky
Or severe autism
Or c p from brain injury at birth

The absolute focus on solely "down patau Edwards" is misleading
As tho once those three ruled out you got some kind of guarantee on your fetus/baby