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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?

(1006 Posts)
wannaBe Mon 15-Sep-08 16:50:52

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 sad.

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?

jellyhead Mon 15-Sep-08 16:56:34

I think it is because it can be easily tested for.
I had a nuchal scan with all 3 of mine but I didn't even begin to think about why and what I would have done if I hadn't been told what I wanted to hear

electra Mon 15-Sep-08 17:00:55

I don't like anti natal testing generally, because it is misrepresented in terms of the treadmill of intervention it can get you onto. I didn't have any with my pregnancies because I felt I would not be happy to take the risk of amnio, which in itself is not insignificant.

The tests can detect other chromosomal abnormalities which have wider implications for the child then downs, and all these things can get complicated once you begin to go down that path...

sarah293 Mon 15-Sep-08 17:02:01

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Tinkerisdead Mon 15-Sep-08 17:02:20

ohhh interesting post. Im 31 weeks pregnant and nuchal was done as part of my 12 week scan.

when i was 18 weeks pregnant i had my double test bloods taken. there was a massive mix up and delay and it transpired that i was tested for kidney and liver function. I was told i had a lovely healthy liver at 24 weeks and was horrified that they hadnt tested for downs etc.

I had a big discussion with my midwife as you have raised and decided that I would have liked to know to have mntally prepared myself, not necessarily for downs but if i knew my child a particular disability then i could have armed myself with what to expect. When I had had my 20 week scan it was the first time i had appreciated why people go on to have a 4d scan etc as it may be very tempting to check for any facial disfigurement etc. i dont think its downs thats scary, more that doctors can detect, downs, spina bifida and edwards and so you can rule out as much as you are able.

as it is, i only have my scans that show things are physiologically normal but i actually feel more empowered that i dont know my risk of downs etc and i truly am embracing whatever i am given.

expatinscotland Mon 15-Sep-08 17:03:22

it baffles me, too, as the parent of a child whose SN cannot be diagnosed antenatally.

also as someone who has struggled with depression for years.

DH and i watched 'the bridge' last week on More4. really put things in perspective, as DH suffers from severe dyspraxia.

he kept saying, about the people featured, 'Poor bastards'. amen!

my ex bf is a neurosurgeon who struggles with bipolar disorder. i remember one time we were outside his house having a cigarette, and a man with Down's Syndrome who lived in the assisted living residence next to my bf's house passed by, waving at him cheerfully and smiling and greeting him warmly.

and bf saying, 'you know, i'd swap places with him in a second but for the fact that i wouldn't wish what i've got on anyone. he's happy with himself. he's happy. i never have been and never will know that.'

and what about people who suffer an accident or illness that affects them?

i've always thought that if you're looking for guarantees in life, it's probably best to not have kids.

LittleMyDancing Mon 15-Sep-08 17:05:03

Well I think it's partly that the nuchal is a completely non invasive test with no risk to the baby, so in the view of the medical profession there's no downside to having the test.

But don't forget, the nuchal can also be used to predict Edward's and Patau's syndromes, both of which are much more severe and life threatening than Down's.

snowleopard Mon 15-Sep-08 17:08:14

Wow wannabe is that statistic true, 92%? I'm really shocked at that. I always thought the testing obsession was daft because few people would terminate anyway. I wouldn't, as I've explained on another thread today.

I reckon it is something that medical scientists have had a lot of success with developing tests for, and it's just become central perhaps because so many other things can't be predicted. I think it's very dodgy though because many of those tests are not very accurate, or if they are they carry a risk, and so they are the source of a lot of unnecessary fear and sadness. As is the attitude of some midwives and doctors towards DS, as if it's the worst thing ever.

snowleopard Mon 15-Sep-08 17:09:19

Great post expat btw.

TotalChaos Mon 15-Sep-08 17:11:30

agree with your second para snowleopard.

jimjamshaslefttheyurt Mon 15-Sep-08 17:14:34

It's the medical model isn't it? Something's wrong - fix it. If a disability doesn't fit in that scenario then medicine struggles with it in its current form. And the medical system has a funny attitude to LD's anyway ime.

I think it's not so much DS though, just that it can be picked up. So the focus is on that. And perhaps not many people realise that say autism (no test available) can be far more disabling than DS. Not always of course as both are spectrum conditions, but every child I've met with DS has been far less disabled than DS1 and far more able to access everyday life and activities, yet many people don't realise that (as ds1 looks 'normal').

charitygirl Mon 15-Sep-08 17:15:18

Yes, I'm sure its partly because the nuchal fold test is an amazing 'trick' (though not 100% accurate of course).

And as someone with CP and a very severely disabled brother, I do slightly object to being told that testing is to do with doctors' ill-suppressed longing to become eugenicists. smile

EyeballsintheSky Mon 15-Sep-08 17:15:59

Like most things in life, because you can. Downs is seen as the be all and end all because it can be tested for and you can be 100% sure yea or nay after the relevant tests. Because of that we focus on it and don't think about anything else. Which is not really a bad thing. You only have to look at threads on here about nuchal results to see the fear and worry it causes. If we could test for other things most of us would be nervous wrecks throughout pregnancy.

I am shocked by the stats though. I didn't realise it was that high either.

shieldofsteel Mon 15-Sep-08 17:16:53

I didn't have a nuchal because it still doesn't give you a yes or no, just a risk. I would never abort because of downs but if there was a non invasive test that said for sure then I would have had it to prepare myself. Can you imagine how many people would abort if there was a test for autism. It seems to be a huge fear amongst parents of v small children.

sarah293 Mon 15-Sep-08 17:18:23

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mshadowsisevenmorefabthanfab Mon 15-Sep-08 17:21:13

good post wannabe
all the testing in the wold would not have shown up dd's cp or how severe it would be, as it was caused at birth.
I think it is because people want the "perfect" baby. and quite often they don't think a child with a disability is worth it.
you see it on threads on mn all the time. and people have even talked of murdering a disabled child as they felt his life was not worthy.

electra Mon 15-Sep-08 17:21:35

The thing about autism though is that it is not clear if children are born with it or not, and I expect that depends and I think there are probably various triggers which affect the child's development. Perhaps this is also the case for a number of other disabilities?

PInkyminkyohnooo Mon 15-Sep-08 17:22:33

Agree very much with sentiments on this thread. Have declined double test with all 3 of my pg for that reason.
First pg had a mw flashing pictures of soemones beautiful daughter at me as if having a child with Down Syndrome would be a fate worse than death and that at my age I was being iresponsilbe. Made me VERYangry.

Have to say, she was an isolated case, and most have understood my POV entirely. I just said I was not prepared to potentially go down a route that could jeopardise my pg when I would be very unlikely to terminate.

electra Mon 15-Sep-08 17:22:48

shock really, mshadows?!

PinkTulips Mon 15-Sep-08 17:23:41

perosonally i ask them to double check for spina bifida at the abnormality scan as immediate intervention for the hydrcephalus after birth can make a huge differance but i'd never be tested for anything where the test puts the baby at risk.

i could never terminate even if it was an option here, i have severly disabled people in my family who are loved and cherished and have lived happy lives so could never even think about it.

at the end of the day, your child can be born 100% healthy and be hit by a bus a few years down the line and end up permanently disabled mentally and physically. they could be worse off than any DS child and there's no option to just get rid of them then.

if you choose to get pregnant you choose to love that child no matter how they come out or who they grow into

wannaBe Mon 15-Sep-08 17:24:24

so should we really be encouraging all this testing?

you only have to look at the hundreds and hudereds of posts about tripple test results etc being high risk and the stress it causes, only for a few dozen posters to come back and say they'd had the same experience and the baby had turned out not to have ds.

How many babies have downs verses the number of "high risk" results? I would imagine it must be fairly minimal?

I didn't have any tests at all apart from my 20 week anomaly scan, and even then I only saw it as an opportunity for my dh to see the baby. There was a 50% chance my ds would have a visual impairment, but my family were far more concerned about that than I was, in fact my mum has suggested it's probably fate that we haven't been able to have any more children, as ds does not have VI. hmm

expatinscotland Mon 15-Sep-08 17:24:50

just watch 'the bridge', particularly the story of lisa, who was 'normal' until her paranoid schizophrenia manifested itself when she was in her late teens until, her health in shreds after years of struggle that is severe mental illness, she committed suicide.

and come and tell me DS, or autism, or CP, or whatever, is the worst thing in the world.

sarah293 Mon 15-Sep-08 17:27:04

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jimjamshaslefttheyurt Mon 15-Sep-08 17:27:25

pinky- are you saying the MW showed pictures of a baby girl with DS as a way of saying how terrible Downs would be?

My god that is awful. If someone ever used my son's pics in that way I would be livid.

But that's interesting in itself isn't it. I linked to some photos of my son shot at the weekend on here the other day. He was surfing- it really wouldn't work as a 'this could be your future' scare- tactic. And yet he is likely to achieve a lot less independence than the girl whose picture you were shown.

sarah293 Mon 15-Sep-08 17:27:59

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