now I know there is no way I would vote for this man

[2shoes]

dipstick that he is

But surely it costs more, if there is a difference, to teminate a baby at 39 weeks rather than 12 or 20?

The cost of termination is nothing I'mnot compared to the cost of a disabled child over the lifetime.

Manny- I can't understand your logic of banning postnatal care if you're going to take away scanning. This isn't about being back in the 60's or earlier. It's a different set of questions. It's about the morality of when and for what a choice should be allowed. Currently, if you're carrying an NT child after 24 weeks then you have no choice- that child will be born. If you're carrying a disabled child - with no legal definition of disability - then you can choose to start over again. If you're going to protect one foetus and not another then you need a definition of 'severe disability' (and of course it doesn't have to be a list of conditions). You could even put it in cost terms if you wanted to (will cost the state X pounds each year etc) - at least that would prevent children being terminated for talipes.

Interesting R3- although having got caught up in the mental capacity act recently- it gets very complicated once our children get above age 11 -and especially once they reach 18 - as to how the law treats them (and imo the law lacks of lot of common sense).

Yes- conditions are on a spectrum- which is why proper couselling should be offered- rather than the worst case scenario that medics offer. For example I was horrified to meet someone with spina bifida- and find out that the only effect it had on her life was the need to wear one shoe with an extra high heel. `Horrified because whenever I'd heard the term spina bifida I'd heard in terms of very severely disabled children. If I had met her after a termination for spina bifida I think I would have been a basket case.

Yes - people may make the decision to terminate understanding that a spectrum condition means the child could be at either end, but at least make sure that people are making their decision understanding what that means so they don't get any nasty shocks later on in life.

I walked down the street and crossed the road with a woman with DS the other day. She was completely independent and looked as if she was off to work, no carer in sight. Years ago I wouldn't have known that was a possibility. Again, something I would have been horrified to find out after a termination.

But I think much of it comes down to prejudice. Most people are surprised when I explain the extent of ds1's disabilities and the level of care he will need throughout his life. He 'looks normal' so therefore he can't be too bad can he?

i think that the reason it is left so late is that quite often it can take 10 weeks for the doctors/parents/ courts to decide if the foetus is 'severely disabled' enough to be aborted. You know, in the same way that we have parents and pcts/legal teams fighting it out over whether child x, who has has never left hospital and is blind/deaf/fitting and requiring resuscitation regularly, should be legally given a DNR as they are a-costing too much and b-there is 'no hope' of recovery?
So, I don't think that you will ever get a straightforward 'legal definition' of severely disabled. Each case will always be dragged at least further than the doc saying 'what do you want to do?' to the pregnant woman... Again, this is my supposition - I have no idea how easy/ difficult it is to get a termination post 30 weeks.
realistically, it all boils down to finance. the reason we don't scan later is because you've already used up your allocation of cash and the nhs is bankrupt enough as it is. if we can persuade enough parents with a disabled foetus that life will be unbearable it will save the taxpayer literally hundreds of thousands of pounds for each foetus via ss and nhs, and it will reduce pressure on critical care services etc etc.
the difficulty of course is that it is meant to be a secret that even if a child has obvious brain dmage/ abnormalilty, there is still no way of telling what s/he is going to be capable of/ cost, so it is completely impossible to plan on this basis. but still makes financial sense overall.
i'm very interested in the financial angle - it is the reason that there is a huge question mark hanging over dd2 as to whether we will be able to emigrate- is she, or is she not, a burden on the state?
all this is truly bizarre in the context of saving the nhs/taxpayer money, when our doors are wide open to the world's weakest, and offer an outstanding level of care and support.

politics. doncha love it.

incidentally - is this the first time an sn thread has gone to 7 pages?

This is hypothetical - scanning is not going to be taken away and neither is post-natal care. But who are we to make a 'moral' judgement and say that one flavour of disability is worth keeping but others are not? How moral is that? If you let nature take its course, then there is no need to decide which babies can legally be terminated and which should not - they are all equal inside the mother.

But the fact that some conditions are on a spectrum is what makes this debate complicated. The only way you could counsel parents would be tell them about either end of the spectrum and then let them decide. As I asked earlier, if DS is readily detectable before 24wks, then why can that condition be legally aborted up to 39wks? Is it a combination of financial reasons and human prejudice?

Got to go out now, will return later to catch up.

This thread deserves to be on Discussions of the Day - whaddya think our chances are??!!

woman gets high odds for ds early, panics, refuses cvs, dating scan, discusses properly with mw and agrees she does want to know after all, then takes 6 weeks to learn about ds and see if they can cope, decides not?

it doesn't even have to be moral/ financial, it may just be it took the parents that long to come to terms with their decision

can they put sn topics on there? i thought is was 'special' and couldn't be out in public to frighten the norms?

I don't see the link between using medical advancements in postnatal care & routine scanning, imho entirely different arguments.

The thought of terminating at 39 wks sickens me, but i have never walked in those shoes.

A friend with a severely disabled son (neuro condition) was followed regularly with scans & offered a termination at 35 wks (no counselling, just a termination) she decided she could not terminate her baby at such a late stage. Her scans had continued past 20 weeks as a minor abnormality was detected & they kept an eye on things to see how it developed.

I could never agree with removing medical advancements in pre & anti natal care just because the law allows some people to make ill informed decisions.
Scans also detect medical problems that are perfectly treatable & dictate what hospital a baby is born at & ensure the correct level of care & follow up is in place.

Please tighten the law with regard to termination but please don't remove choice completely,

Sorry x posted, i'm too slow at this!

I have a friend who is having all the tests possible in her pregnancy - but she is in a difficult relationship and if it was me, I would be having him tested.....

By MannyMoeAndJack on Thu 21-Aug-08 10:03:16
Got to go out now, will return later to catch up.

This thread deserves to be on Discussions of the Day - whaddya think our chances are??!!
good god I hope not. Imo the only reason this thread has not kicked of, is because it is hidden in sn. if all the "norms" came on board it would be horrid.

Just so wrong.

I do feel though that those who choose to have a lot of pre natal testing must feel uncomfortable deep down as they often try to avoid personal responsibility by suggesting that the tests are normal or routine and that everyone has them - rather than admit, 'I have chosen to have extra tests for my own reasons' - at least that's the impression I get from my friend.

but the whole set-up is designed perfectly to allow people to avoid personal responsibility for very good reason. you only have to look at the way julia hollander is treated to understand that if you are pregnant with/ give birth to a very disabled child, then your choices are very very limited. imho i could understand perfectly that someone would feel incapable of dedicating their entire life to the care of a dependent, but equally would not be able to cope with the guilt and public vilification of putting the child up for adoption. maybe in the long run it is easier emotionally to accept the medical advice that aborting the foetus is the right thing to do. i wouldn't presume to judge, and honestly would not know where to start with making that decision for myself, however much i know/ don't know about each type of disability.

"long run it is easier emotionally to accept the medical advice that aborting the foetus"

but we are not talking about a foetus, we are talking about a viable baby.

I don't think the element of personal responsibility can go away even if an individual would like it to go away. My friend, who had all the scans/tests, complained that she had to pay for some of them as they were not all offered by the NHS. I did say that not everyone might feel the way she does but I don't think she was happy with that idea. She would have preferred the tests to be seen as no more than routine (like a dental scan) and that people who might ponder the differences between babies and teeth are just 'weird people'.

I haven't read all of this thread, just the very beginning and the link. SO I might say something really stupid that has already been hashed out. But I can't see anything wrong in what DC is saying and I certainly will vote for him as he KNOWS what its like to love someone so vulnerable and dependant on you but to not wish it on others. To me its all about choice and just because there is a choice doesn't mean that people make the one that so many consider unacceptable. I certainly do not think that a person with disability is disposable or that they should be eliminated but my simple way of thinking about it is in relation to my DD. She will have spent her whole childhood living with the impact of a brother with severe SN (I myself grew up with a sister with AS and it severely coloured my childhood). When it comes to DD's chance to have a family I would like her to have as much information and as much choice as possible in whether she lives the rest of her life with even more impact of disability. It is quite likely that she would choose to take on that role and responsibility but I think she should have the choice if possible. I love my DS and I'd smack anyone who said otherwise, but would I really choose this life? Would I choose to wipe someone else's arse for the rest of my life (or to make sure someone else does?). I think not. But I am quite happy for other people to make their choice and live with it just as I would.

'can they put sn topics on there? i thought is was 'special' and couldn't be out in public to frighten the norms?'

That last bit just about sums up the entire thread.

At the heart of this issue is the fear and prejudice that surrounds disability, whether the disability occurs in utero, during delivery or during life itself.

Davros, a good post, very honest. My feeling, after following this thread and hearing all the POV, is that choice is good but that it entails that a moral line be drawn somewhere - the placing of that line lies at the heart of this issue for policy makers.

there was athread in the tv topic a while back, started out about a programme on abortion and ended up as a debate about murdering disabled children. imo it wasn't pleasant. a poster was posting that she had once seen a young boy and deemed his life not worth living, so he should have been killed(my take on it, not her words) because she "was disabled" herself mn hq allowed the posts to stand.
there lies the problem with trying to debate this on the wider board.
at least on the sn topic, even if we don't agree we stay nice.

Riven - all the disabled people I know are children and all of them, without exception, are severely or profoundly affected so would not be able to share their views.

Another angle on this issue which nobody has mentioned yet is the idea/concept of quality of life. In the case of my ds, provided he is being engaged in activities that cater to his sensory/gross motor needs, then he is in his element, giggling, laughing, really enjoying himself as well as the next NT kid. However, my friend's ds - in his mother's own words - 'has no quality of life'. That may sound blunt but her ds is very profoundly afffected, has no means of communication, cannot play, hates things (washing, dressing, etc) being done to him and so on. I think quality of life is something that parents probably do consider when deciding whether to terminate a disabled baby or not but again, this thinking could be called selfish to alleviate their own guilt. There are no straightforward answers here.