Why is it that people are so obsessed with testing for Downs syndrome, when there are so many other disabilities which cannot be tested for, that are far, far worse?

[wannaBe]

It baffles me.

When we fall pregnant we are offered tests, and scans, most, although not all of which relate to the detection of Downs Syndrome.

At 12 weeks we are offered a nuchal fold scan to determine the likelyhood of the baby having downs, and women over 35 are routinely offered anmio to detect whether the baby has downs.

92% of pregnancies where Downs is detected are terminated .

And yet there are lots of other disabilities, such as cerebral palsy, autism, other disabilities which cause learning difficulties, which cannot be detected in utero, but which can be much, much worse than downs.

So what is it about Downs that is so scary?

Or would people have far more stressful pregnancies if all disabilities could be tested for, and would they feel that they had to be sure their baby would be perfect?

oh riven I can relate to that (although dd was never written of they said she had mild cp ffs, if she has mild cp I will eat my head) dd is known by name by everyone at her school.

me too riven. cp is much more likely to end up with a wheelchair and epilepsy(fucking hate epilepsy)
but as it is rarely detected befor birth.....

yes, riven, I wonder that too (re: testing for DS then ending up with a baby with a different disability). I thin that's part of what wannabe was getting at with this thread.

silverfrog, you misunderstand. I am interested in people's personal experience, what I have said about 20 times now is that you cannot draw conclusions from one person's personal experience or apply that person's experience, feelings and choices to anyone else's. Not when it comes to having or not having a child.

In terms of when it adds up, I just don't think it works that way. Some people would not consider a termination under any circumstances on principle, some people have a sort of internal list of conditions that they could cope with and ones that they couldn't.

As far as my own choices go, like other posters here I couldn't be 100% sure. There are some conditions I'd like to think wouldn't even make me consider a termination, others I might be fairly certain would. But as has been pointed out even if diagnosed with a particular disability like Downs there are so many variants of that like other conditions linked like heart defects that I just couldn't give a categorical response.

I'd have to find out everything about the condition (facts, figures, outcomes, medical advice and look at RL experiences - general trends and particular accounts) and THEN weigh up my own values and priorities and needs in life.

But I have said what some of MY fears are and other people's only for them to be dismissed, derided or made fun of so you'll perhaps understand why I was reluctant to do this as are other people.

When 12legs said she was worried about the impact on her lifestyle including travel it was treated as a massive joke.

For me, the biggest issue of all would be whehter a child I gave birth to might be in pain and the ability to hold down my job which I love would be one factor that I would also have to consider.

Then my husband is part of the equation. Fathers have been very absent on this discussion but what he thought would be hugely influential on what I chose to do.

As far as individual expereinces go of course they're INTERESTING and may be helpful but may not be.

A bit like giving birht for the first time. You can't listen to a few people's stories and then make conclusions about what it will be like for you or that their experience and choices will be the same as yours or right for you.

And nobody would dream of telling anyone else how or when to give birth or what is best so why is it ok to tell people that they don't know their own minds or that one person's experinece will be the same as anotehr's when it comes to termination.

5candles - you just can't see it can you? In the phrase I quoted you said 'the majority' - which means you consider there is a minority whose lives you think are the opposite of happy and fulfilled e.g. pretty rubbish. How do you know that, how can you judge and how can you speak for them? I don't need to go looking for 'bad things' no because the differing values you have placed on human life leaps out of your posts. Ok it's your right to think that. But you also seem to think that if you keep posting everyone who disagrees with you will throw up their hands and say 'oh ok then, devalue our children, our lives and our love' They aren't going to do that and tbh you should be pleased this thread is running out of space because I don't think posting here can be doing your peace of mind any good at all.

One reason (there are lots) why I personally am not planning on having any more children is because I feel so lucky with the ones I've got. I want to devote all my energy and love to them. And my age and declining energy and commitment to my work and my husband's feelings and the fact that my 2nd baby was more prem than my 1st who was also prem. And I don't want to make any agonising choices. Don't want to have to make deicisons about antenatal testing, don't want to have to make agonising decisions about termination.

My experience on this thread has actually confirmed that choice. I meant it when I said I wouldn't want to discuss my feelings about pregnancy and disability with anyone ever again given some of the vitriol I've read here.

Oh dear Northern 'you consider there is a minority whose lives you think are the opposite of happy and fulfilled e.g. pretty rubbish. '

Erm, it's not that I 'consider' this. I hate to break this to you but some people aren't very happy or fulfilled and are a bit rubbish.

I'm really sorry if this is the first time you've heard this

The most miserable people I know all have 'normal' children.
So your point is......

No I don't riven. I've just told you that I would and have weighed up 100s of things before option for antenatal testing or would before a termination. I would never tell anyone that my experience is going to have any bearing on THEIR lives which is what other people are doing here.

I have given examples of particular people and particular experience BUT I have not used those to make GENERAL points except that those people and those experiences DO exist.

riven I think your stuff about 'perfect' babies and 'perfect' families is out of order.

Testing for certain conditions including Downs and possibly having a termination is not the same thing as expecting or wanting a 'perfect' child if such a thing exists.

But you think their lives are miserable and unfufilled because of their child. It's a very one dimensional view of people's lives - and treats the child in a different way to other children. How about the miserable people you meet with no disability in their lives or families? Do you look for one factor, one child who must be cause of all this unhappiness.

I tend to think the people I meet who are miserable are miserable for a whole variety of reasons.

I really can't think of anyone with a severely disabled child that I know who is though. We're a fairly jolly if moany lot. We can bond over tales of SS crapness.

I agree with riven

'You keep claiming we must all be miserable cos you know one person who is.'

No, you keep saying I do.

Where have I said this?

Why do you invent things that I have never said or believed. Can only think that it's paranoia or that you're looking for a scapegoat.

Well you see as I am not all knowing and all seeing and having the keys to the heart of all souls I rather shy away from making an asssumption about the percentage of happy versus non happy people. Of course as you obviously have that you are perfectly qualified to assess the numbers concerned. How silly of to me think otherwise.

Or to put it another way - you don't know how many people are happy or otherwise. But you think you do and you base those thoughts on the assumption that at least some of the parents of disabled children, and those children themselves are wretched and miserable. Making that assumption is what is being objected to here. The broader assumption made by society so often that having a disabled child is a diaster is what is being objected to here and you should be able to see that even if you can't shift your world view.

I can certainly empathsize with riven and 2shoes.

My sister has Downs syndrome. We have the complicated relationship of all sisters - it is a tapestry of events, emotions, memories some good and bad. I don't see her as my sister who has DS but my sister.

I would never judge another woman, but when I hear of babies with DS and other conditions being aborted, I cannot help transferring it to my sister - someone has made a judgement that her life with all its richness simply shouldn't be.

How this feels is indescribable, but it pains me. I can't guess how it might feel if she were my child rather than my sister.

This is what a poster said to me on Weds:

''But I'm not allowed to assume that other people with severely disabled children are happy'

And this is how I responded at 21.58:

'And no this is not what I've said or believe. I've said for the zillionth time that your expereince, choices and feelings will not be the same for everyone.'

Just sort of bizarre how people keep coming up with these accusations out of nowhere and then not listening to my responses.

Like I said some people are only hearing what they want to hear. And they perhaps need to ask themselves why they would like me to be the dim, ignorant prejudiced person tht I'm quite clearly not.

fivecandles. Everytime someone says "well I have a disabled child and am happy" you come in doom laden and say "well not everyone is".

Do you say that to people with "normal" kids. If they tell you the kids have made them happy do you insist that they must accept that not everyone is made happy by children.

Incidentally earlier on in the thread you talked a lot about limited life expectancy and poor quality of life. I hope you have learned from this thread, that those are both rather outdated wrt DS.