What do you think of Emmerdale’s Downs Syndrome abortion storyline? *contains spoilers MNHQ*

[IntoP20]

I don’t actually watch the programme, but just read a headline that explained two characters (Laurel and Jai) are going to make the decision to terminate their baby with Downs Syndrome.

Is this damaging to new parents /expectant parents and those with Downs Syndrome themselves? Or is this a positive move to reduce the stigma around women being able to make choices about their bodies?

I’m all pro choice but let’s be honest at 38-40 weeks we are not talking about cells anymore, it’s very different situation. We are talking about human being.

My baby born at just the end of the abortion limit wasn’t a clump of cells, and she was nowhere near full term. But that doesn’t mean I don’t support another woman’s choice to abort at the same gestation or later.

Because it isn’t about me or my own pregnancy. It is about another woman and her choicen

I don't actually have a problem with the current law but in the interests of honest debate I am not sure you can say the current law is all about the woman's autonomy. It's currently against the law to have a late term abortion except for medical reasons so at some point the woman's choice ceases to be a deciding factor, except in cases of tfmr.

Me and dh was actually discussing this the other day, and I said as much as I would be gutted, I would abort if my child had a high chance of having DS.

At first he disagreed, but when I pointed out you can’t guarantee a high functioning child, but instead you may get own that requires life long care and could have a child like mentality as an adult, he saw my point.

I admire those who discover their child has a disability and continues with the pregnancy, but personally I couldn’t do it myself

@Soubriquet

Me and dh was actually discussing this the other day, and I said as much as I would be gutted, I would abort if my child had a high chance of having DS.

At first he disagreed, but when I pointed out you can’t guarantee a high functioning child, but instead you may get own that requires life long care and could have a child like mentality as an adult, he saw my point.

I admire those who discover their child has a disability and continues with the pregnancy, but personally I couldn’t do it myself

But you can’t guarantee ANY child is “high functioning” or won’t need life long care.....

@Soubriquet

Me and dh was actually discussing this the other day, and I said as much as I would be gutted, I would abort if my child had a high chance of having DS.

At first he disagreed, but when I pointed out you can’t guarantee a high functioning child, but instead you may get own that requires life long care and could have a child like mentality as an adult, he saw my point.

I admire those who discover their child has a disability and continues with the pregnancy, but personally I couldn’t do it myself

But you can't guarantee anything with any child. Traumatic birth injury. I've a friend who's life is awful as she has two children with autism. Children with conditions that are only found after birth. There are no guarantees having children that you will get a "perfect" one.

But there is an utter fixation on Downs Syndrome.

I think this meme is appropriate here.....

curlie because of something called chances and probability?

@ChooseYourLameName

curlie because of something called chances and probability?

Of what?

Yes, she may end up living with us for the foreseeable (mind you, my NT brother still lives with my mum and he’s 29...).

But equally, she’s got a decent chance of living independently, just as many people with Down’s syndrome do...

She could become a star in the special Olympics, complete Ironman, work in Pret or JojoMamanBebe, spend her days volunteering in charity shops, get a place at Foxes academy.....or she might not. She’s 5. Who the hell am I or anyone else to predict her future?

Christ, I believe in a woman's right to chose (as early as possible, as late as necessary).

But there are some blatantly disablist posts on this thread, some that contain outright lies eg: that people with Downs are at increased risk of cancer.

I don't disagree with the general thrust of your post but I don't think that's a lie. People with downs' syndrome have a ten-12 fold increased risk of developing leukaemia according to the first respectable looking entry on Google. Of course you can argue that's a tenfold increase of a low risk.

For example www.childrenwithcancer.org.uk/research/projects/leukaemia-down-syndrome/

But they also have a better leukaemia survival rate I believe....

I think this is a really hard one. I guess the storyline itself does reflect the fact that statistically, many people do choose to terminate. But I don't watch emmerdale, so i don't know how the decision is presented.

I would terminate myself. It's a very personal decision, but I have felt pretty sure in my previous 2 pregnancies that this is what I would have done when I accepted the testing - for me a lot of it is about the uncertainties and also (once I had my first) about knowing more about what kind of parent I am. I accept that this may make me more selfish and that this is offensive to some parents of children with DS, because their children do bring them great joy, and they will see it as a denial of that fact. But it is not intended to be - there are lots of parenting decisions that I have made that might imply that other people's choices are "wrong", but that is not how I see other people's choices at all.

I know that there are lots of conditions that you can't test for in any way at all, let alone with reasonable accuracy (though not 100% unless you use amnio, which comes with risks), so the reason for the fixation on Down's syndrome is simply because there is a test and people like to feel in control at a point at which they are very vulnerable as a newly pregnant and woman. If a test were available for another condition, you would have the same focus. The testing simply brings the focus in my view.

I think that better advice is obviously necessary, though I note that one study evaluating "Tell it right" training among medical professionals did raise concerns that the focus was on case studies with families who were relatively wealthy and obviously coping. But medical professionals often see the cases that are difficult and are likely to be more pessimistic, so there is balance to be struck. It would be inappropriate not to recognise that there may be specific risks and challenges, or to make the material sound like "good selfless parents do or feel x", but it really isn't ok to present DS as a certain barrier to having a good life.

The testing simply brings the focus in my view.

So when there are prenatal tests for autism, dementia, cancer, depression, bipolar, MS or whatever. What will we do then?

Probably there would be a lot of focus on the negatives and increased terminations for some of those conditions too.

So when there are prenatal tests for autism, dementia, cancer, depression, bipolar, MS or whatever. What will we do then?

Exactly. I am lucky my dcs were not born with Downs Syndrome. But they each have very significant health issues which mean they need more care than most children.

If I'd been told there were significant risks of these, would I have continued with the pregnancies?

Surely we should be pushing for better support for families with disabled children rather than asking pregnant women 13 times if they want an abortion. That could be perceived as coercive.

I also think there are some disablist posts on here.

I’m surprised there wasn’t other stories to tell in 2020 rather than covering DS again.

It took me many years to get pregnant but DH and I were in agreement that we would not proceed with a DS pregnancy. He had a close relative with DS. Although dearly loved once their parents died they were pushed onto some relatives, frankly it totally broke them. They were very ‘low functioning’ , never toilet trained their entire life and there were many issues to do with that. They couldn’t do anything for themselves. Once their carers died they ended up in the care system and over the years the standard of care dropped hugely and it was miserable. No one else was willing to take them on, whilst all complaining they were in the care system, it caused many family disagreements.

I have a friend who wants to take on her DS sibling once her parents aren’t able. They have multiple issues and her parents life is very limited (they couldn’t come to her wedding, they can’t travel at all, they have never visited her). I wonder how difficult it will be for her 3 children if this happens.

I don't think that flagging abortion as an option (not 13 times - once, clearly, with a follow up at the next appointment to clarify whether or not a firm decision has been made or if further support is required to assist in a decision, should be quite enough) is a problem. Women should have a clear choice without judgement in making that choice.

But any women who choose not to terminate should be approached with positivity and joy from that point on, not given doom messages again and again. And social support should be better. Much better.

Access to abortion and social support should not be dependent on one another.

As to other conditions, cross that bridge if there is an accurate diagnostic test that is developed. I don't think that there is any such test on the horizon for autism.

My son has an eye condition I was told he could go blind and was expecting him to be wearing glasses by 4. Well he could go blind but at 10 he isn,t wearing glasses. My point? We tend to focus on the worst case scenarios and what stands for one person does not stand for another. But peple make like and death decisions based on poor advice and worse case scenarios.

People with downs' syndrome have a ten-12 fold increased risk of developing leukaemia according to the first respectable looking entry on Google. Of course you can argue that's a tenfold increase of a low risk.

Leukaemia and testicular are the only two cancers they are at increased risk of, people with Downs are in fact at decreased risk of many more types of solid cancers - to the extent that researchers are studying the protective properties of Trisomy 21 to see what it can teach us about tumour inhibition.

That's good to know Golden. The purpose behind my comment was only in support of a previous poster who had been accused of saying things that were "patently untrue".

Thought-provoking article from The Atlantic taking a comprehensive look at the issue of pre-natal screening for Down's Syndrome:

www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928/

I think if a DS person is supported beyond childhood by a caring fairly financially comfortable family who can guarantee there will be a guardian if the parents die, then all good.

But I would not choose to have a DS baby (if I knew about the DS before birth) basically because I couldn't afford to provide the child with an adequate lifestyle tailored to his or her DS should they not be high functioning.
Sadly during austerity social care cuts, & benefits cuts & education cuts have made life extremely difficult for many working class people, especially the disabled & those with disabled children.

If I gave birth to a child who turned out to be quite disabled I would have to struggle on as giving up your own child is out of the the question but it would be extremely hard in poverty.
Basically at present I'm being very careful to not get pregnant!!

I think it's too easy for people in a position of privilege to judge women who are mothers to be.

Aren’t the stats something like 90percent of people say they would continue the pregnancy even with a prenatal diagnosis of ds

But in actual reality, 90percent choose not to continue the pregnancy

I hadn’t seen any stats about how people answer the hypothetical question of what they would do given a prenatal diagnosis, but it’s true that the figure for how many actually terminate is above 90%.

This is why we’re so up in arms about this storyline - it just confirms the ‘doom and gloom’ about how diagnosis is delivered and what the vast majority do afterwards. Which is such a shame when they had the opportunity to showcase good practice, both In terms of how the news is delivered by the medics and how a family can be signposted to up-to- date information, their local charities and other new parents - Rhona and Leo could have been the vehicle for this, but no ☹️. And the thing is, if they’d had have done this, the end termination wouldn’t have been so bad, as they would have been shown making this decision fully informed, given their particular circumstances...

Or even better, an unnamed (but incompatible with life) disorder would have allowed them to run the same storyline exploring the consequences of and helping destigmatise TFMR without damaging a minority community - which is what the DS community is.