A world without Down's syndrome?

[Hulababy]

Anyone else watching?

Interesting so far

Also I am NC with any family. My biggest worry as a mum if what will happen to my girl when I'm gone. I honestly don't know. She's eleven and already it's a concern of mine - a cute little child is very different to a great big adult to most other than their mother. This is something that people also have to have the option to consider.

Very biased programme

I'm still unhappy that having a child with a disability is seen as a tragedy that should be avoided if at all possible. Who can tell what will happen to the children we bear? There are all sorts of reasons why we may have to end up caring for them our whole lives. Does that mean their and our lives have been wasted?

This:

My dd2 was born without her left arm from below the elbow.
We saw it on the 20 week scan.
There is nothing else wrong with her. She is 12yo and has just been awarded the academic prize for her year at school (300 pupils), she plays the trumpet and sings (working towards grade 5 in both), has performed in various places round the country and does gym, dance, climbing and various other things. The only thing we've so far found her struggle with is piano and people's attitudes.

We were lucky though. We had a positive attitude from the staff at the hospital.
Others have not. We've heard of people who've been taken straight from the scan to talk about abortion. People have been told that if there's one problem then the chances are there are other catastrophic problems (not true-less than 1% of those born with a little arm have other issues). And yes, people have been offered late abortions. I don't know how many people take up the option of abortion because I don't meet them. I meet those who have gone through with the baby and you know what, I know no one, not even those who have further issues, who think it would be better if they'd aborted.

That is often the reality of people discovering before they're born. A child who will be disabled. It's scary. I can tell you that. I made a list of all the things I thought she'd need help with. How we'd have to adapt the house, our lives, school... everything. I don't think we've done any of them because they weren't needed. The thought can be scarier than the reality.

And having a normal child doesn't carry the guarantee they'll stay "normal". I would say nearly a third of the people we know who have lost limbs have lost them after birth. Mostly more than one, often through meningitis. Should we kill them off too? Or you? Lets say you lose a limb? Through an accident or illness. Should we automatically think of euthanasia? Because it's far harder to lose a limb later than to be born like that.

My dd is not a "poor little scrap" or "what a terrible shame". She is a girl who lives life to the full. And the only thing that stops her is people, people who look at her and make a judgement "no she can't do that" "she won't be able to do that"... I'll tell you what, try her and she will, and probably better and faster than most people.

I haven't seen the programme, but think SP is coming from the vantage point that parents should be informed of what it can be like to go ahead with pregnancy if DS is v.likely. She'll know that not all kids will function as well as hers, but most people will have had the worst case scenario rammed down their throats before making a 'choice'.

If you seriously think parents whose babies have a diagnosis or suspicion of serious illness are routinely told of any positives by their HCP, you are naive at best, deluded at worst.

I don't base this on tv, or anecdotes but on my personal experience at one of our 'leading' hospitals relatively recently. The first consultant cried (understandably, our child had a condition that pretty much guarantees death in this country). The second consultant (who we expected to confirm things), misdiagnosed based on a Wikipedia page about my disability which cannot be passed on. He is v.v.senior in pre-natal diagnosis in that hospital. It was only when we pushed for a scan at Mr Nicolaides clinic in another hospital that he accepted he was wrong - he then pushed termination on us at every opportunity. Every conversation was about if we'd decided yet, he bullied and tried to manipulate us. He even boasted another couple were in the same situation as us and he was on a mission "to make them see sense". He became completely unreasonable and also told us he did not want us at the hospital, but would only suggest we go to a local small hospital where there were no ventilator (in the possible event baby did not die - which he did not, until we chose to take him off the ventilator - and yes, that choice was largely down to the sheer force of pressure the hospital, including the Head of FM put us under). It wasn't just him (horrible man) but pretty much the whole FMU.

Having done further research I am now aware there is a specialist in the condition at Birmingham, and both there and elsewhere (mainly the States, and some parts of the Middle East) things would have been dealt with very differently both during and after pregnancy - and our son might have had a chance to live.

Sorry if I seem emotional. Fact is, consultants and other staff will not give you all the info other than a leaflet on termination. Presumably they don't have time to talk through the condition diagnosed, and sometimes don't seem to know who you can talk to about the condition (certainly had no clue with us). When we asked if they would be willing to communicate with another consultant who specialises in the condition they refused and pushed all the harder for termination all the way until 37wks. This was all quite recent, not historic, and the consultants we dealt with are still there, in what is regarded as one of the best hospitals in the country - I still have screaming (literally) nightmares about the place.

As an aside, my disability is something I was born with, and causes me a huge amount of pain which I hide well. This has not stopped school peers, or work colleagues telling me that "people like you should be aborted", purely because I have a disability. I did/do not have obvious concessions, worked hard, paid taxes etc, but that's not enough for people who think I shouldn't exist. However, I do believe choice should be just that, a choice. But in order to have a choice, you first need to be educated in best/worst scenarios and termination - not either/or.

Ive just watched the program,
I think the test is fantastic, more choice, more preparation. My issue (which is what the program highlighted for me) is that the persuasive nature of the medical staff should not lean you towards one way or the other. She's right, if someone who "knows what they are talking about" is telling you to terminate, your going to have doubts and maybe make a choice you wouldn't have done. The medical staff give you the worse case scenario facts, as they should. But that doesn't make it feel balanced.
The problem is the test does not show severity and with such a huge range in severity you just don't know really what you and your unborn are potentially facing.

Of course she would be emotional, she's discussing the fact some people would choose not to have her son. If i was meeting people who were choosing to terminate my daughter for something thats fundamentally part of who she is, i would be emotional too.

Please remember that pro choice is just that. Pro choice. Not pro abortion.

An I am amazed to hear that about Professor Nikolaides. It does not match any other account I have ever heard of how he deals with his patients. Or, indeed how he dealt with me. I am very sorry to hear that you had such a horrible time.

Bertrand the documentary did not really discuss being 'pro-choice' or not though, in very great depth. 'Pro-choice' is not really the main issue of this debate.

This programme dealt with the possible implications of earlier screening for chromosomal abnormalities, such as Down's, in a context where many positive screening tests result in abortion, where women feel under pressure to test/abort in a 'high risk' scenario when at the same time people with Down's have been able to experience greater quality of life than historically, due to greater understanding of this condition.

I would argue it is changing this context, in terms of the pressure women experience, which needs to happen.

If I'm not misreading Karen, I don't think she was talking about Mr Nikolaides, only that the consultant with whom she was dealing only accepted he was wrong when she asked for a scan at Mr N's clinic...? I could be wrong. That sounds appalling, Karen.

"Bertrand the documentary did not really discuss being 'pro-choice' or not though, in very great depth. 'Pro-choice' is not really the main issue of this debate"

Well, apart from the obvious condemnation of the woman who chose to have an abortion. And the constant suggestion that there is a move to eliminate people with Downs. And a throwaway remark about eugenics. And loads of images of happy, smiling high functioning people with Downs. It was full of pro life propaganda.

Bertrand

No. The comment about eugenics is not a comment against being pro-choice but lack of choice in the pressure women feel to either abort/test then consider abortion in a scenario which is considered high risk for Down's. In a governmental system which promotes or enforces eugenics women's choices are severely compromised in that they are severely discouraged or forced to abort babies that do not meet certain criteria.

The analogy can be used here in terms of the pressure women feel from medical professionals or society to abort/test (and consider abortion)in scenarios which are considered high risk for Down's.

I felt, personally, Sally was visibly emotional when talking to the woman who had aborted due to high risk of Down's but this is understandable. It is not as if she hid her biases.

Well I bet there are not many women who would go on national TV and say,"My child was unfortunate enough to be really severely mentally and physically affected, they were in hospital a lot, suffered a lot and then they died. It was pretty awful for everyone and TBH if I could go back in time I'd have a termination". So you are never going to get everyone's views represented. Which is not to say that this type of programme shouldn't be made, just that you wouldn't expect balance.

Francis choice is restricted now in terms of women feeling pressurised to abort or test, then consider abortion in scenarios which are considered high risk for Down's. Sally Phillip's documentary addresses this. In doing this and stressing the need for better information regarding Down's, allows women more free choice, not less.

And you shouldn't call it a documentary, as SP did at the start!

Oh and, realistically, most 'documentaries' are 'opinion pieces'. Very rarely is there enough time taken and research done to do a completely balanced piece..

DH has said he won't watch it with me. He had an aunt who had DS (who lived until she was 65) she outlived her parents and all her siblings.
Although I am sure she suffered from having no education at all which may have helped. She couldn't do anything for herself. She could speak but not well and couldn't express herself. She had lifelong issues with the toilet. She couldn't make food or drinks alone.
DH watched his elderly grandparents struggle and then other members of the family to care for her.
They did refuse to put her in care because they always thought she would be put in a 'mental hospital'. When she was put in a home through no choice it was a hugely positive experience and she was probably the happiest she'd ever been
However .....
In the last few years of her life the cuts from the government we're having a real impact on her quality of life and resulted in often with her being left alone - she was not capable of being left.
It's fine for Sally if she has money which can make all the difference. But maybe sally should be looking at the support there is for people with DS first before campaigning against aborting them.

DH loved his aunt dearly but said he would never have a child with DS after his experiences. He would be too terrified where they would end up and who would care for them in the end.

Is the answer then to campaign for better life opportunities and support for people with Down's or continue to allow women to be actively encouraged ( as per the women's experiences in this documentary) to consider aborting a foetus which is at risk of having Down's?

I would be interested to know what percentage of women have already made the decision to abort if their unborn baby has DS? I am one of them, and as I have said on another thread my husband and I have personal experience of DS so we're not uneducated on the matter. If medics are pressuring people to end their pregnancy then that's wrong but it isn't the only reason people chose to, as people like me have already made the decision.

Rock-are women in the UK forced to have abortions?

A vital part of that informed choice is an early and accurate diagnosis.

Francis, in one way, yes.

However earlier accurate testing can only more accurately predict a likelihood of Down's. Which allows for earlier, less complicated termination. The earlier testing is not able to detect the severity of any actual health conditions, most usually associated with Down's. This information cannot be known until much later in the pregnancy. So decisions will, potentially, be made on the basis of having less information, regarding a foetus' actual health condition, than with later testing.

Bertrand I would say (possibly vulnerable) women have, most probably, been strongly persuaded to have abortions.

Gosh. Can you say what makes you think that? It certainly doesn't match my experience.......

Bertrand I have relatives, who are health professionals and who have worked with vulnerable people? In some cases they have worked in their field for over 30 years. I also personally know someone who was pressurised into having an abortion. The choices we are given, with regard to our health, can very easily, be compromised.

That should not be a question mark. Typo.