A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

Francis I have not said women should be denied the new test. I have pointed out the advantages and disadvantages associated with it, as I see them. The documentary did not draw any conclusions as to whether women should be denied the new test either, again it just explored advantages and disadvantages as far the documentary maker(s) could gather.

Do you not believe any of the experiences of the women in the documentary and on MN, where they felt pressurised into abortion, are true?

I can of course see SP's point. If there were more people with ds around, then it would be beneficial for her child, and what mother would want anything but the most positive environment for their child?

I was offered an amniocentesis for dd, but declined due to the risk of miscarriage. I backed out on the morning of the test. Had there been a completely safe testing option, I would have taken it, but I still don't know what I would have done with a positive ds result. But it would have been my decision, made for my family and certainly not made because someone else had a positive experience, or that it would be nice for their dc to see other ds people out and about.

I know two children with ds. One is the happy, very high-functioning poster child for ds. The other has a myriad of health problems and has severe learning difficulties. You are not guaranteed the former.

"Bertrand another conclusion to make is that women are not universally presented with unbiased information within the NHS"

"The leaflet, which is the first hit if you google NHS Downs is, you have already agreed, balanced.

"Making women feel they are wrong/naive/cruel/uncaring/ stupid to not abort a foetus with Down's is horrible" The only person who might possibly have been made to feel any of those things on SP's programme was the woman who chose to abort.

Bertrand

One balanced NHS leaflet on Down's does not mean all women's experiences concerning the information on Down's offered to them through the NHS have been fair or without prejudice on the medical professional's part.

Do you disagree, then, that the women interviewed in the documentary, who was repeatedly asked about the prospect of her baby being born with Down's and whether she had considered abortion, when she had especially requested that this was not discussed any further with her, received unprofessional and prejudiced treatment? (as she portrayed it)

Personally, I felt that woman was rather overreacting about how she wanted "declined testing" plastered across her notes, and said (I'm paraphrasing) "if this new baby also has Downs then I don't want to know until birth, to protect the baby from the doctors".

I don't deny that, from her perspective, she feels that HCPs were against her continuing her first pregnancy. But the way she talked as if the medics were conspiring against her second pregnancy was more than a bit paranoid. Because no one could force her into a termination she didn't want.

Jinx, her suspicion was proved to be correct though, as born out by her later experience.

She was repeatedly asked why she had declined testing and how she felt she would cope if she allowed another baby of her's to be born with Down's.

If someone makes a decision to decline testing this really needn't be repeatedly questioned. This repeated questioning over a decision this woman had a legal right to make, and had made, and had expressed they needed no further advice upon, does compromise choice.

Francis my experience is that I was encouraged down a certain route when a high risk of ds was identified. If no one is gathering testimonies then evidence of this will be thin on the ground. I'd never heard of spuc until these threads so they did not have impact on my decision process. Obviously I can't speak for anyone else.

The mum doing the presentation to hcp in the documentary did give some direct quotes from hcp to parents of babies with ds that were not neutral, fact based or supportive.

You can believe people or not. If there is no research you can only go by anecdotal evidence I suppose.

i watched most of this on catchup yesterday - most of it because it made me so fucking furious. The outright anti-abortion bias, her privileged lifestyle. She has no idea of the lives of the majority of people with disabled children who have to fight tooth and nail for the bare minimum of stripped back services. The pressure on relationships and families. Sally Phillips and her children want for nothing. She hasnt got a fucking clue, shes just emotional about the cute little loving downs babies

Francis, thank you for clarifying that.

It was what you said here:

There is no factual evidence to confirm that women feel pressured into having a termination.
None at all.
There is factual evidence that confirms there are pressure groups like SPUC that seek to erode the right to termination.

which confused me, Francis, hence the question.

FrancisI see.
It is easy to swap from common usage meanings to scientific terms on these threads. People come from a variety of backgrounds.

Coming from a more literary perspective the 'None at all', seemed rather starkly emphatic. Especially in a context where, at least, anecdotal evidence (rather than quantifiable, independent etc) was available. Too emphatic for an exclusively scientific interpretation of what you posted.

^or should I say anecdotal data? Probably...

My cousin has a boy who has Down's syndrome
They were older parents. Knew the risks and had no tests. 18 years later the reality of their lives means they would make different choices.
He is fabulous, however he has major heart problems will never live independently could not have a job. But he gets great joy from life. And for me this is The crux.
He gets enjoyment from his life.
His mum and dad have had a v v challenging time and their guilt knowing that he will probably out live them is hard.

I had tests and would not have continued with a pregnancy showing significant abnormalities
I think it is a totally personal choice what reasons people choose to have a termination or not.

Francis I get it...& agree about the support and information.

The injustice of women being badgered about a decision they have made not to consider aborting a foetus with a diagnosis with Down's or not to undergo testing for Down's really unsettled me. This is the opposite of being supportive and offering unbiased information and advice.

Posters on this thread, who were more concerned a woman's choice to abort on their feotus being diagnosed/deemed high risk for DS, as a first priority, seemed to want to 'gloss over' the concern of women feeing pressurised into aborting/testing. I feel concern over one scenario does not preclude concern over the other.

"A woman's choice to abort is not respected", that should say. Typo.

Rock, it is not at all my experience as a HCP that women are ever badgered about a decision to decline testing or to continue with a pregnancy when the baby has DS or any other diagnosis.

The reason some women may feel HCPs have laboured the point is because there is an absolute responsibility to ensure women/families have all the information currently known so that they, and they alone, can make the decision that is right for them at that moment in time. Which might have been different two years ago, or in five years time.

I wonder if the woman in SPs programme whose perception was that HCPs did not respect her request for no discussion was in fact being offered information that HCPs have a duty of care to offer.

Maybe, Izzy. 'I can see how having a 'duty of care' ,to offer to offer information, could be interpreted somewhat clumsily. Perhaps offering a leaflet, when discussion is expressedly stated as not being wanted, would be better than something that could be perceived as a 'grilling'.

The woman in question already had a child with ds. What could a hcp possibly say to her that she didn't already know? Talk about not respecting women's decisions about pregnancy.

"Posters on this thread, who were more concerned a woman's choice to abort on their feotus being diagnosed/deemed high risk for DS, as a first priority, seemed to want to 'gloss over' the concern of women feeing pressurised into aborting/testing."

"Choice" does not mean "choice to abort"

I had actually forgotten that awful talk to the HCPs by that emotionally blackmailing woman exploiting her daughter. How anyone can think that was OK I have no idea.