A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

*With DS screening you are pregnant for a period of time, with CF you are not.

So it's really just about the involve of a woman's body?*

No, its about a life limiting condition vs a potentially just intellectual disability.

Its about knowing you are a CF carrier. Also I have a friend with CF, aged 46. She would take great umbrage at the idea that she should never have been born.

All this has to be thought through to its full conclusion.

Lynda eggs and sperm being screened is not the same as up to 40 week gestation foetuses being terminated because they have DS in my view. There are ethical issues to be looked at in both instances but they are simply not comparable. There is an uncomfortable consensus at play that some life matters more than others and that those with DS are at the bottom of that pile. That societal attitude has ramifications for children born with DS and their families.

I have a great friend with CF, so please fuck off with your suggestion I am saying she should never have been born.

She had screening for CF herself, because she didn't want her own child to have the same illness as she. I don't think she thinks her own life is worthless.

So you are saying it's OK to die young and spend a good part of your life in hospital if you are also intellectually disabled?

I am a CF carrier merrygoround. I would absolutely terminate if I could find out that I was carrying a foetus who had the gene, even if they only had one so were a carrier rather than affected.

I can't speak for other HCPs but I believe I am always clear and direct in offering information about screening options .

It would be absolutely unacceptable for me to do anything other than this because each family has an unassailable right to make the decision which is appropriate for them at that particular moment in time.

Parents consent for screening for each of DS, Edwards and Patau's syndromes individually due to the individual nature of each. So some families will decline screening for DS whilst wanting screening for the other syndromes.

When a trisomy is detected some families may feel the choice which is right for them is to terminate the pregnancy. Some families may feel the right choice for them is to continue.

HCPs responsibility is, without exception, to offer information and support whatever choice each family makes, which is why I was shocked by Lynne Chitty's remarks to SP.

I am also surprised at the comment about midwives/nurses crying at the birth of DS children. In the initial moment of joy and relief at a safe birth unexpected DS is not something that is immediately obvious. So if the midwives/nurses were aware of the situation it is unacceptable that they should cry.

Steve - why are you bringing 40 weeks' gestation into it? That's the beauty of NIPT - it can be carried out in the first trimester.

In any event, I support a woman's right to terminate her pregnancy at any point, for any reason.

DoinIt

You can fuck off right back. What is the point in having a discussion if your ultimate reaction is Fuck Off.

Wbat reaction other than "fuck off" do yiu exoect when yiu insinuate that someone wishes their best friend had never been born?

Yiu can't imagine youbare the only person on earth who has a friend with CF?

I'm shocked reading these messages at just how many of you have missed the point. This documentary was not about telling women not to have a termination, it was about facts not fear. I think we must have been watching something totally different.
I am totally pro choice, women fought long and hard for that right and I stand by it. However, I believe in informed choice. At present when a woman is giving a down syndrome diagnosis, they are pressured and pushed by health professionals into a termination. Not always, but mostly. They are told how horrific it will be, how hard life will be, how their children will never have a good quality of life. Not once are they told of how wonderful it can be. For a women to have a choice she needs information from both sides, else it just begins an informed decision.
I have an 18 month old son with ds and we have a wonderful life, he is loved and loves and nothing will stop him. Is it hard? Yes, but the hardest thing of all is peoples perceptions that his life is not worth living. It is! He is high functioning yes, many, many, many are. Are those that are not are still entitled to respect. And we are not rich, Sally's son is not happier because they are.
She is wonderful and has given a voice to many families and children across the Uk. This was not about making women feel guilty about terminating, everyone has the right to make the decision that suits them without judgement. This was about providing up to date information about what having down syndrome really means.

Lynda I am comparing the ethics of pre conception and post conception screening, you directly compared the ethics I think different ethical issues come up.

DoinIt Cant you see the nuance? Really?

If my friends mother terminated then she wouldnt have been born.
I am not insinuating that anyone who wishes anyone wasn't born but screening and termination leads to this outcome.

So I am clear, if I tested and the tests came back positive for DS, I think its likely that I would consider termination (its hard to say for sure what I would actually do) . I have nothing against an individuals choice but I think that the actual end game has to be thought through - these conditions gone which lets fact it are hard to face. BUT also lives not being lived because they are seen as less when in reality, these lives may well be happy. So you are ending a pregnancy because of the condition but at that point you dont know how that life would pan out.

I have a daughter with DS.

As she went off to sixth form today, all I could think was that " a life without downs" would have less sparkle, fun and laughter. She has Down Syndrome, it is just how she was made, she does not suffer from it.

I don't believe it was about the facts bluezebra. It was heavily biased towards SP's own viewpoint that Downs is a mild condition and it's not acceptable to terminate for Downs, ever.

"I worry that people will refuse NIPT testing on the basis of this programme, under the guise of being oh-so-enlightened and "I'd love a baby with Downs Syndrome anyway", because they think that's all the test detects - and then be completely sideswiped and utterly unprepared if their child has one of the more severe trisomies that aren't compatible with life."

the "worst" outcome then is a baby who dies most likely soon after birth...
for some that might be preferable to terminating in utero.

and you can have NIPT negative for Down syndrome and still have a completely different chromosomal disorder like a micro deletion - which my ds has - or microduplication or say rett syndrome (far more severe than down syndrome) .. you can still have a child with ASD mild or severe or any number of conditions.

NIPT may lead to more down syndrome being detected, may or may not lead to more terminations - but it wont stop babies with intellectual disability being born.

i think the over focus on down syndrome is naive as it not the only syndrome or possible outcome; and Edwards and Patau are not the only severe syndromes either. go to any SEN school and the majority are kids who don't have down syndrome...

• yes there needs to be more awareness of the wide range of DS abilities to make a choice. it is naive of SP to battle against a non invasive test which provides information.

she should focus more on raising awareness of intellectual disability in general (not just down syndrome) - which could happen to anyone eg after illness or accident or stroke - and getting it accepted as a variant of human life and making sure the support is there - from financial ss etc to general public acceptance.

If Sally Phillips is so evangelical about educating people about what Downs might mean, why hasn't she campaigned before? Why is it the advent of this new safer and more accurate test that has spurred her into action?

That's the bit that I don't get. Any test that can enable parents to make an informed choice is a good thing.

For those asking 'where does it end? Where do we draw the line? Who decides who is worthy to be born?'

The answer is the line is drawn by individuals, wherever they choose. They decide whether to go ahead with a pregnancy, not wider society or any advocacy group.

Any child I had would have 'worth'. But only I get to choose if I want to continue or not. For any reason I may have, which is no business of anyone else.

I think a lot of people who are arguing against terminating re DS have little or no idea how 'serious' it can be. I think they naively see people with DS as only being 'sweet, loving, friendly people with a mild LD'. They don't see the many, many people with DS who are seriously ill, who die very young after spending half their lives in hospital & they don't see the angry, confused, risk taking, teenager who will do anything she's asked by strangers if it seems like it will please them. I think they need to walk in some shoes before proclaiming it to be a 'mild condition'

Whether it's DS, CF or similar things, I don't understand why we wouldn't choose to stop people suffering from these conditions if we could. Terminating a cluster of eggs & sperm is not the same as saying 20 year old Fred shouldn't be here, isn't loved, or isn't valued. Safe, early testing is a good thing. What people choose to do is their business as much as it's their business if they choose to terminate simply because the timing of a pregnancy isn't great. We all should have those choices, even if we PRIVATELY find some decisions 'acceptable' & others 'not so much'. PRO CHOICE means accepting that other women will make different choices than you would.

Bluezebra, absolutely not true that women are 'mostly 'pressured and pushed into termination when screening for DS is positive.

It is true that women who have opted for screening often decide to terminate the pregnancy when DS is positive.

Perhaps the outcome of SP programme will be that women make different choices.

And again, absolutely agree with Morris. And Gingerbread.

Each and every woman is ultimately the person who decides whether or not to continue with her pregnancy - regardless of her reasons.

In 50 years time they'll be screening for everything & only perfectly healthy babies will be born - if you look at it from the NHS's point of view disabled children cost them ££££ - money they don't really like spending. It's in the governments interest to not have that many disabled children born ( harsh but true )
From a parents point of view, safe screening for DS is a very good thing, I welcome it 100%.
There will always be a minority of parents who refuse all testing/ screening, so Down's syndrome will never be totally eradicated, but as the years go on there will be less babies born with this condition - is that a good thing?
I don't know.

The decision to terminate a much wanted pregancy due to DS is not made in a vacumn. I support a woman's right to choose to terminate a pregnancy. However in the case of DS what does society tell us about people with downs? The Prof on the programme last night talked about the 'burden' of DS. The language is so negative.

Making the decision to have a child knowing they are going to have DS is very different to finding out after the birth. Termination is so common for DS would people judge someone who had a baby knowing they had ds?

There are so many other chromosomal problems or causes of learning disabilities but all the focus is on DS. If there was a test for autism would there be an ethical debate? Many people with autism are of normal or above average intelligence. Would termination for autism be as acceptable?

I think all the focus on DS is due to the history of the initial screening programme in that it was rolled out without an ethical debate at the time.

I think another poster has already made this point and I agree with you Creamcracker.

At present when a woman is giving a down syndrome diagnosis, they are pressured and pushed by health professionals into a termination. Not always, but mostly. They are told how horrific it will be, how hard life will be, how their children will never have a good quality of life. Not once are they told of how wonderful it can be. For a women to have a choice she needs information from both sides, else it just begins an informed decision

I agree on women needing the best possible information in order to make decisions about whether to terminate a pregnancy or not, but this holds for the current bloods and amnio testing offered on the NHS. The new test doesn't alter that one jot.

Also, it's far from clear to me that the 90% (not entirely sure of stats?) of women who currently terminate a pregnancy when DS is prenatally diagnosed, have been harried into it by poor information or medical assumptions that this is the norm. That seems to me to belittle women's own agency and power to access and decode information, and arrive at an informed decision. Why does it seem to be unpalatable to some posters to see that the vast majority of women whose babies are known prenatally to have DS choose to terminate of their own free will, after accessing all the information available? Is it easier to think that they're being pressured into making that decision?

I think the programme was intended as a counter point. I think being the parent of a child with disabilities has made me aware of how people with disabilities are seen as less.
I think she isn't advocating that tests should be denied.
I think she is alarmed that the joint focus is on cutting services and support for people with disabilities whist spending ever more money on testing. I think she was wondering where the end point is.

I think that's a valid discussion and I wonder about the fury TBH.

I would like to find someone who can explain to me why abortion limits don't apply when disability is involved, without me feeling incredibly uncomfortable about it.

I think it was biased, but then hearing people spitting ignorant crap about DS being a spectrum and user1471 talking about DS in the same breath as Alzheimer's makes me shudder.

I have many wonderful people in my life with DS - adults and kids. There is a nasty pernicious strain of intolerance here that makes me uncomfortable. The talk of "overweight" and "no longer cute" adults with DS is pretty hideous - as though their lives are valueless and burdensome.

The documentary was far from perfect and I confess to having found SP rather irritating on it, but in MN style, the mob feels they have to weigh in and out-outrage each other rather. Which depersonalises the issues and seems to make people feel free to say some pretty awful shit.

If anyone on here has a child with DS I hope you aren't reading this thread .