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?

It's simply because Downs Syndrome is relatively common and we CAN test for it. Heart defects are also quite common and can also be seen on scans. Autism cannot be tested for, so how could it be a testing issue? I am sure that many people with or without an autistic child would opt for testing and termination if it could be tested for.

thank fuck you can't test for it then. I always thank god that you can't test for cp.

A huge number of women abort babies each year which as far as they know are perfectly healthy, because they don't feel they are ready or that they would be able to cope. Children with SN are usually more difficult to cope with - more of a challenge, and many people feel that they are not ready for this or that they could not cope. That is why the abortion rate for babies known to have SN is so high. The only reason there is more testing for trisomy (Downs, Edwards, etc.) is because it can be done in a non-invasive way.

I would terminate for a condition incompatible with life.

But there's a difference between incompatible with life, and incompatible with my life, iyswim?

yes that's exactly what I'm saying, jimjam.

The picture was on a leaflet and she kept thrusting it in my face. I actually had to tell her I had a good childhood friend who had ds and she was making me very upset with her behaviouur- I was annoyed that I had to jusify myself to her at all really, but she wouldn't shut up.

Bloody hell Pinky. The worst thing about that, is, as you say it's someone's child who they love.

'But there's a difference between incompatible with life, and incompatible with my life, iyswim?'

Well put.

This sounds harsh, but if you 'can't cope' then don't have kids/get sterilised, IMO.

Life has no guarantees. Everything could be going swimmingly and you could get hit by a bus and YOU could be the one to end up with the so-called disability. So, if the shoe were on the other foot, how would you feel about everyone deciding for you that your life was not worth living?

Riven I think it's because so many have a "it would never happen to me" attitude. So disability never actually features in their thinking, and when it does, their only reaction is to iliminate it, because it couldn't happen to them.

My mum terminated a pregnancy when I was 7 because she didn't want another disabled child, even though she was told it was unlikely, given no-one else in my family has VI and no reason was given for my VI. But she just wasn't prepared to take that risk, and so I'm positive that if she had known I was going to be VI she would have terminated me too.

I don't think there's a one size fits all answer to this. All people are different, all children are different. To some people, a disability would be the end of the world, to others it wouldn't.

I don't think I can be 'against testing' or 'pro testing' in a sort of sweeping way.

When we chose to terminate our last pregnancy at 20 weeks, we found it a terrible decision and we are still living with the grief and the pain.

But we had to weigh up the problems the baby had with our ability to cope - both financially and emotionally, and also the effect on DS. And we found that it didn't come down to morals or beliefs - it came down to 'what is the right decision for our family'.

Yes, disabilities and health problems can happen after birth as well as before, and if they do, then of course parents have to roll with that punch. But that doesn't mean one shouldn't necessarily look for them, either to prepare oneself for what's coming, or to make some very difficult decisions about whether to continue.

But then the one thing I am wholeheartedly pro is abortion on demand, so I guess one hurdle for me is already crossed, iyswim.

I believe that one of the biggest causes of learning difficulties is premature birth.

Isn't ironic that in one room of a hospital they might be spending thousands of pounds to keep a tiny premie alive, but in another room they might be carrying out a late termination for Downs. Ironically the child with downs might have been a lot less disabled than the poor little premie.

The special school I work at has only one child with Downs, inspite of the fact that twenty years ago there were many more. The child in question has a good quality of life and is happy.

I agree with expat, if people are not prepared for the fact their baby might be disabled then they shouldn't have children. IMO.

I think having a child with disabilities is one of those things that you really can't 'get' until you get one IYSWIM.

TBH I don't think the way parents are betrayed as being angelic or earth mothers help. I think society endlessly sends out the message that you have to be bloody amamzing to be a parent to an SN child.
I would imagine that any parent being told thatthey have a child with a disability is going to be overawed. Which is tragic. Because my DS2 was the best thing that ever happened to me.
The notion thatthrough fear of the unknown I could have been led towards a presumptive test and termination is heartbreaking to contemplate as life with my DS2 is the poorer.

The thing is for me though, is either you believe in abortion on demand or you don't, iyswim.

If I believe people should be allowed to terminate pregnancies because they don't believe they're ready for a baby right now, then I can't really judge people who terminate for DS at the same stage of pregnancy, if that makes sense.

Late termination, ie after 24 weeks, is a totally different issue, though.

I think the thing that people really don't understand until they have a disabled child is that you love that child every bit as much as your other children.

So you don't do things through duty, or because you feel sorry for them- everything you do is because you love them. And you get the same pleasure from being with them and their company as you do from your other children.

I really don't think people get that.

absoloutely.
thats what i was trying( and failing )to say.

and whenever you get down about it, there's the SN board . i always think of JJ's line about how she might have been a crashing snob had it not been for her DS1 and it makes me smile .

well said expat
and pagwatch I know what you mean, my dd is the light of my life(and dh and ds's) It is so horrid when people see her life as not being worth the same as an "nt" child.

I did the same wannaBe - only had a 20 week anomaly scan to see if a specialist needed to be on hand at the birth (my ob talked me into this and I thought it sounded sensible).

What I find infuriating is pro-life women who have amnios to test for Downs. I mean, why put your baby at risk if you're actually going to have the baby? And isn't that inconsistent morally? There must be some small part of your mind that thinks you wouldn't. I'm looking at you Sarah "I'm a fucking bampot" Palin.

"...you could get hit by a bus and YOU could be the one to end up with the so-called disability. So, if the shoe were on the other foot, how would you feel about everyone deciding for you that your life was not worth living?"

Without meaning to upset anyone, I can imagine circumstances where I would hope that that decision was made. Where my quality of life was extremely poor, I had no chance of recovery and I was a burden to my family. It would be a decision for them rather than for me. Of course, then you get into the impossible situation of trying to determine the quality of life that somebody else has...

Oh gawd I would have been dreadful he's saved me from myself. I would have been so precious people would have been barfing around me.

That's what so wrong about what that midwife did to pinky. Somewhere there's a family loving that little girl with every inch of their being and her picture is being used to encourage people to terminate. It is utterly sick.

i'll never forget visiting my uncle in his care home a few years back (severe SB) and meeting a woman there who was severly mentally and physically disabled just like him. only she was able to tell me that she'd been 'like you, then crash' (i think crash was car crash but she just mimed it so not sure) suddenly she woke up stuck in that chair, not able to speak properly or think clearly, surely that must have been worse for her than any baby born like that as she remembered being an active healthy adult when it was all taken away from her?

there is no way to protect our children for something like that happening

who are we to decide that a life with DS is worse than death?

But the difference is, Upwind, in such a circumstance as an adult getting hit by a bus, it is often much clearer what quality of life he/she will have long term.

With a foetus who has a condition like Down's, it's not, because it's a spectral disorder like autism or dyspraxia (after all, Michael Phelps has come out about his learning disabilities).

And therein lies another misconception. That disabled children are somehow 'burdens' to their family. They're not. They're just member of the family, same as everyone else. And valued and loved as much as everyone else in that family.

The idiots people that run social services are burdens. But the children aren't.