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?

My pregnancy was made a stressful experience which I didn't enjoy at all through numerous things all of which stemmed from the triple test. We're currently trying for another baby & I have no intention of having the triple test or anything else except scans (DH doesn't agree with this mind you). I've yet to meet anyone who was high risk for DS & went on to have a DS child but I know a few people with DS children who had perfectly normal tests. To me testing seems a total lottery. My son was born prem, had severe jaundice & needed an op for something else none of which could have been tested for.

'Do you respect the choices of parents who terminate because the baby is a girl?
Its the same thing.'

I am talking about children whose quality of life and life expectancy would be reduced.

That is NOT the same as being a girl.

Incredibly offensive.

And BTW 'kill' is an incredibly emotive and offensive word.

Again incredibly offensive and patronising.

I don't have 'huge fears and issues'. I made an informed choice about antenatal testing based on quite a lot of understnaidng and research.

'Wouldn't it be good if they did have tests for CP, autism. Atleast you could prepare for that.'

Even better, I'd like to see tests for future assholeness, twonkishness or propensity towards fuckwittage.

"severe disability which would have affected his or her quality of life and life expectancy"

I held my daughter for her whole life. I watched her every breath and watched when her chest became still. She was healthy and shouldn't have been born, but even if she hadn't have been healthy, born term and still only lived a short time, I wouldn't swap a moment with her. She has brought so much to my life just by being in it.

Cotes, you said 'will try to avoid a major disability in their babies if at all possible.'

Terminating isn't avoiding a major disability in the baby, it is extinguishing the life of a unique individual. All babies are unique. You can't pick another packet up, like a loaf of bread that is a bit squashed at the supermarket.

I declined the nuchal, declined the triple test, but will have the 20 week anomaly scan. The reason I will have this is because I want my child to have the best medical care at birth, or even prior to birth if necessary, so want to be aware of any developing needs.

One thing I am sensitive about is the possibility of my baby having something along the lines of a diaphragmatic hernia, which could be treated prior to birth, but if undetected would result in death after birth.

I want my child to have the best support, whether NT or with a disability, because it is my child I love, not perfection.

riven, do I take it you are against abortion on principle?

If so, there's no chance of continuing this debate rationally.

I find your points and attitude incredibly offensive TBH.

'I am allowed my opeinion 5candles that parents without disabled kids have no real idea what it is like. '

I agree.

I also hope people like Thomcat and eidsvold don't see threads like these .

But then, Cote, we will also have to disagree that I am simply carrying a 'fetus that will develop into a child.' My child lives in me as we speak, it is just a matter of whether my body can support him/her until he/she can live & breathe independently.

i'd chuck in bull-headedness, riven, but it's bound to cause a riot .

"Wouldn't it be good if they did have tests for CP, autism. Atleast you could prepare for that."

PMSL @ 'prepare' for it. What by putting in extra locks and toughened glass. A baby with autism is pretty much exactly like every other baby. In ds1's case a lot easier as he was so passive and smiley. You can't 'prepare' for life. You just live it.

It's extraordinarily assumptive to imagine, at any point, sitting in a group or talking to other parents of a disabled child that anyone would ever be brave enough to admit that thay are waiting for their child to die or wish they hadn't been born. Quite strange to think that noone has these feelings.
It's also arrogant and ignorant to think your own experience is that of others. I get that this is really personal but this is personal for all of us, it's not so PC to say you'd terminate or an easy thing to say when people write about 'life' and/or perfection.
When you are the parent of a SN/disabled child I'm not sure you have the right to speak for all. I for one know of a couple who frequently foster terminally ill (through disability) children because they're parents can't cope, don;t want them, feel ashamed, etc. They have also adopted some including two children with DS because the condition didn't fit in with one family of professional parents and one who had three children under five.

Ah graciefer- a very very wise post. I suspect your beautiful ds2 will be subject to more prejudice throughout his life even though his needs are less than your ds1's.

agreed, jimjams. dd1 was an incredibly easy baby too (mind you, I kind of wish I had put all the locks etc on now that dd2 is here - she really is Trouble )

jimjams's son has the added benefit of being extraordinarily good-looking.

Their.

I also think that people's perception of what life is like for a person with Down's syndrome hasn't moved on much since I was a child in the 1960s.

12legs- those parents are in the minority. I've already mentioned Julia Hollander. To suggest (as she tried to) that that situation is common is to misrepresent. People give up children without SN as well - in those cases the assumption isn't that there is something about the child to blame.