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?

Meant to say I also believe in individual choice in cases of any TOP and antenatal testing.

jimjams, I knew what my obst's own stats were wrt miscarriage risk of amnio, which I think are far more pertinent than national figs.

I also knew about mosaics. I knew enough - from my research and info from the hospital - to make the decision about testing. I wouldn't have done anything differently.

This is a very interesting/infuriating thread. Noone actually seems to be interested in listening to anything anyone else says, just in talking about their pov or their particular beef with the medical profession/society's treatment of people with disabilities or SN/freedom of choice etc.

I'm also intrigued that lots of people have said that they think people who terminate are doing it for x y and z reasons - and yet several people, including me, have come on the thread and said very honestly that they have had a late termination and yet noone seems interested in finding out why, or what process we went through, or whether we did it out of fear or ignorance or prejudice, or whether in fact it was something completely different.

Glowers is right - you cannot make assumptions about anyone else's decisions - so why not ask? Why not inform yourself? It's easy to dismiss everyone who takes a different path to you as stupid or ignorant, it's much harder to find out about who they are and what makes them tick.

It's as if everyone on this thread has made up their minds already and is just going to yell about it until kingdom come.

So what have I taken away from this?

1 Society has a long way to go in terms of being positive about disability

2 The medical profession also has a VERY long way to go in terms of both being positive about disability, and in terms of providing adequate information to parents having antenatal testing

3 Parenting a child with a disability or SN is just as rewarding as parenting an NT child, and the love parents feel for their children is the same whatever their needs (not that this is something I didn't know already)

4 BUT I think due to the lack of support and understanding about disabilities and SN, parenting a child with a disability or SN can give you a particular view of the world which may or may not be accurate, and may be coloured by some pretty negative experiences along the way, which many of you have shared.

For example, I used to think that discrimination in the workplace was a myth, or not that serious, until I started to look for a job as a woman with young children. Now I believe that discrimination is alive and well!

But then again, some of the jobs that didn't interview me might just have had better candidates, rather than being discriminatory, but it's hard not to see it as discriminatory because I have experienced discrimination in the past, and that makes me very sensitive to it. Iyswim.

And really, for me, that's about it.

Great post LittleMyDancing. Totally agree.

can someone answer this question, please(sorry if it has been covered and I have missed it)
it you have all the tests and you have a termination because of ds, how pregnant would you be by then?

Littlemydancing - I did ask questions along those lines (the fear/prejudice/ignorance lines) a couple of days ago.

But the only answers I got were that we shouldn't be quick to generalise, and that one's persons reasons for terminating would not be the same as the next (well, durr)

I think that is part of the question wannabe was trying to address - in fact she asked in her Op "what is it about down's that is so scary?"

I think this thread has gone a little astray, but the question remains - what is it that people find so scary (about Down's, and other disabilities)?

I think that if we had all discussed that question, this thread would have been very different.

technically you could terminate up to birth 2shoes - in that you would be terminating for disability and I know of a woman who was offered a termination for a baby who was shown to have down syndrome at 36 weeks pregnant.

in fact I think there was a case similar to that in the UK - the woman was about 36 weeks pregnant.... see if I can find a link for you 2shoes.

yes, theoretically you could be near term. In a lot of cases, it would be picked up at the latest at the 20 week scan.

If you had a high risk OSCAR (assuming you had one), then you could either have a CVS immediately, so you would know the results at about 13 weeks, or an amnio at 15 weeks, so you would know then.

So in most cases, 20 weeks at the latest.

In some cases though, as eidsvold has said, later than that.

silverfrog - I entirely agree. I would be interested in knowing why there is so much fear about Down's Syndrome too, and this thread could have been very interesting on that front.

In our case it wasn't Down's, but we researched the condition our son had extremely carefully, read message boards for people living with the same condition, talked to people on Mumsnet, including a nurse who cared for people with this condition and people whose children had this condition. We downloaded information from the relevant charities, talked extensively to the specialists who diagnosed our child, and explored what kind of post natal care and treatment our baby would need, as well as the possible outcomes. We even waded through research papers on experimental surgeries.

Hence why I get a bit cross about the 'fear and ignorance' idea, when I'm sure many many parents in this position do their homework in exactly this way for disabilities such as DS, and some of them still opt for termination for very valid reasons of their own.

I do admire your attiude riven. I respect your position completely.

'But despite how stressed I can get, how many anti-depressants I'm on I still don't wish I'd terminated dd.
I have found life unbearable some days, especially watching her have seizures and lack of sleep.
But being a parent is hard and I don't wish any of my kids weren't here (including non-disabled dd1 who ran away from home and gave me a nervous breakdown)'

All I'm saying is that there are people who know now that they wouldn't have your strength. Yes, you can say how can be abolutely sure but if you go down that line how can you know anything and yet sometimes we have to make decisions without having the experience and even where we have doubts? But if that's what they believe - that they haven't got the strength to deal with a child with disabilities or don't want to ahve to find it - and that's what they decide it is wrong to judge their choice or to say that they don't know their own minds.

I also think that to make an informed choice you have to be completely informed and that means the bad as well as the good. I don't think it is helpful to anyone to paint a rosy perfect picture because life just isn't like that as a parent even where your child does not have disabilities just as you're saying (and I agree) that it needn't all be doom and gloom either.

I mean, sorry, I respect your position and feelings in relation to YOUR family. Just think it's wrong to take any sort of general conclusions from your personal experience and apply that to anyone else's life.

'If you can't cope with unknowns then don't have kids.'

That's not really the point is it.

Antenatal testing means that if you know you can't cope with certain KNOWN conditions which can be diagnosed then you don't have to.

just came across this and I suppose a number of the sentiments are how I feel about this topic....

here

'because they have an issue I might find hard'

This is what I mean by dismissing some people's very real concerns about certain conditions.

There are a certain conditions which are not just a bit difficult like potty training or whatever. There are certain disabilities which make a child's life and that of their parents very, very hard and for some parents unbearable for almost all of the time. I really don't think that's something that can be glossed over as though they're just a bit selfish really.

sadly a lot of the known conditions are far less invasive in terms of lifestyle and the impact on a family than others that are unable to be tested for.

Please don't patronise to talk about someone's strength in caring for a child with sn. We are not strong - we just get on and do what needs doing - being advocates for all of our children sn or not, being their parents, loving and caring for them - trying to raise them in a world that sees some of them as disposable - seeing some of them as less worthy of life and of being a part of this society than others. You disparage our children and their worth by making it seem like it is such a struggle and burden to care for them. As one of the few people of this thread who has real life 24/7 experience of living with the impact down syndrome can have on lives and a family - I resent that implication.

Perhaps things wouldn't be so tough if other parents/people were holding up their end of the deal - raising their children to be accepting, welcoming, not afraid of what is different.

Why ds - cause we can - I think it is simple as that - because the test is there and it can be detected - who is to say in 10 years time it won't be a different condition?

Looking back at your original post - I have no idea what it is about Down syndrome that is sooo scary.

'I'm applying it to babies.'

Well, I'm sorry, but I think it's wrong to take any sort of general conclusions from your personal experience and apply that to anyone else's life.

We're actually not talking about babies even but foetus and your experience should not influence the choices that women make about their bodies and their family planning and neither should you judge them for the choices that they do make.

Just because you have a disabled child does not give you the right to judge other people who choose not to where it's possible to make that choice. And that's where I take issue with you - you just don't seem to respect or acknowledge the fact that people are different and make different choices for their families. Different does not mean wrong.

By eidsvold on Wed 17-Sep-08 12:07:27
technically you could terminate up to birth 2shoes - in that you would be terminating for disability and I know of a woman who was offered a termination for a baby who was shown to have down syndrome at 36 weeks pregnant

omg how horrific. so not really a termination.