To be shocked 90% of Down's babies are aborted?

[Strictly]

I was jut reading this sorry, yes it's from the DM!

and then did a little Googling and it turns out 91% of people told their baby has DS will have an abortion...

I'm just astounded it's so high. I'm not making a judgment on the idea people might abort, but am very shocked that it seems almost universal to abort if told the baby has Down's.

I wonder what it is about that particular condition that 91% of people feel they could not live with? The rates for abortions of Cerebral Palsy babies for example is nowhere near as high. Is it just that Down's is easy to detect so the majority of people actually get the chance to decide?

When I was pregnant with ds (now 9)I had a 1 in 10 reading for downs syndrome after the triple blood test. I would not have had an abortion but decided to have an amnio to find out so I could prepare myself for having a downs syndrome child. In the event he does not have downs syndrome. I think the triple blood test is highly unreliable and in my subsequent pregnancies with my two dds refused it (one midwife wrote REFUSED TRIPLE TEST on my notes). I was annoyed with myself for having the amnio as it does carry a small risk of miscarriage but felt that I couldn't spend the next months not knowing and in the state of anxiety that I was in - I don't know if the blood test has been refined now but it was rubbish.
Like EricNorthmansMistress, I think I would have considered termination for very serious disabilities, but not for downs syndrome. Also some disabilities are detected late and the older the foetus, the more awful the termination - that's the part I find difficult to get my head round.

Im not surprised and if I would imagine that I would terminate had my existing children been diagnosed with downs syndrome

90% of those peope who are told.

If you have decided that you would not abort if the test was positive, in most cases youowuld not have the test, because the test in itself carries risks.

So really you should be shocked that it is not 100% - as there is no reason to have a potentially-miscarriage-inducing test if you are not planning to abort/not abort based on the result.

the very way testing for down syndrome is usually presented often implies the underlying assumption that you would terminate if it is found.

agree with others that the figure is not surprising given that testing for down syndrome is kinda offered as test so you do something about it. so if you go for the test and it says yes and the consultant is saying well you do have the option of terminating and that's ok - then of course many will choose to do so - and that is their right...

what they forget to say is that there are hundreds of other genetic conditions which arent identified so easily. and others just cannot be detected in utero eg severe autism or CP which usually stems from birth/post birth trauma

having said that a non invasive test which is accurate is a good thing to avoid miscarriages of "healthy" babies from amnio. and being prepared for a baby with special needs is a good thing in a way.

getting "rid" of babies with down syndrome though wont stop many other disabilities/syndromes/conditions - here is a naievety in some people thinking well it hasnt got downs so everything is fine.

but high risk for downs then saying it doesnt have downs due to this test doesnt rule out other chromoosome disorders- i was told high risk for downs but guess what my ds doesnt have downs- yippeee right??

-but guess what he does have a rare chomosome deletion not detetable on routine amnio /chromosome tests and his needs are much more severe than most people with down syndrome.

that is life.

I see that's been said already.

Agree with what has been said before: it is 90% of those who are told

My blood tests with DD came back as a 1 in 30 chance that she had DS. It was assumed that I wanted an amnio, but I refused as I knew I wouldn't terminate so there was no point (IMO) of having the amnio and risking miscarriage. If I had another baby I wouldn't have the blood tests TBH, I didn't think hard enough before having them about what their results could lead to.

Someone always comes and talks about all the other conditions that can't be detected whenever there is a Down's thread (or a thread with Down's syndrome mentioned).

What is the point?

Some things cannnot be detected - does that mean we should stop testing for those that can?

I think it is horribly sad.

AFAIK, people with DS who are the most severely disabled tend to have co-morbids - e.g. also CP or ASD. Does anyone have stats on that?

The school I worked in had a minority of children with DS, and we were a school for children with PMLD and complex needs. Most had severe ASD or CP, and the kids with DS had additional problems. Most kids I worked with who had "just" DS were at the MLD school, or in Mainstream.

I am most definitely not just thinking of babies and children - I know many people with DS, and worked for the Down Syndrome Association when I was a student. I have a life-long friend who has DS, who is moderately affected (lives in supported housing but has a job and is literate/ numerate.)

I do not think doctors have a realistic view of disability - my friend's husband has achondroplasia, and her doctor was horrified that she planned to continue her pregnancy even if scans picked it up in the child. That is something with no associated learning problems - not surprising that doctors view DS as an automatic abortion decision.

It depends what you see as important. What is it about someone with a SLD (if the DS is at its most severe) that makes them not a valid part of society? Do we want to eradicate DS as if it was a disease? That scares the hell out of me.

As the mother of a Cerebal Palsy child I know that it is very very unlikely you would get a diagnosis pre-birth. I have certainly never heard of it.

Whereas knowing 100% that you will have a Downs baby gives known facts on which to work. I just got my results and had they shown a Downs baby then yes, I would have terminated. Because I know how much hard work a disabled child is and I know I wouldnt be able to cope with another.

I was reading earlier in the week about testing the mother's blood for foetal DNA and using that to detect chromasomal abnormalities such as downs so avoiding the risk of more invasive testing.

To those who say they wouldn't abort so why take the risk of a test, would you take a blood test to find out?

I would have had an abortion, and went for the CVS, when my baby showed risk of DS and trisomy 18. He is fine!

I wouldn't, Tyler. I have had scans, because that was the compromise I reached with XH, and also, they can pick up things that can be fixed or changed. Chromosomal differences can't be fixed or changed, therefore for me there is no need to know.

But I am not saying the tests shouldn't be there, or that people shouldn't abort if they feel they must, or even if they just want to - it's their body, and I genuinely believe that abortion should be available to term for any reason.

Agree with cestlavie, my niece tested 1 in 10 for downs, her mum refused further testing, she was born perfectly fine but has severe Autism and has far more problems than most children with downs syndrome have.

Such is life

EricNorthmansMistress, I was going to say the same thing, it's very high amongst those who are prepared to go for amnio or chorionic villus sampling (which itself carries a small miscarriage risk), but about 40% of people don't even go forward through the screening process or have an initial screen and then don't go for an amnio. Only the people highly motivated to avoid Downs might be likely to need to know, have the amnio and then have a termination.

So, there are more babies with Downs syndrome born now than twenty years ago, due to maternal age, and people not going through the screening processes due to fears of miscarriage or not minding having a baby with Downs.

It's not quite a simple picture as that statistic suggests at all.

Its not shocking at all.

Most of those who wouldn't abort don't have the tests in the first place. The test (amnio/CVS) carried a 1/100 chance of miscarriage. Why would you go through with such test unless you felt strongly about aborting.

TBH I'm surprised its not 100% - that means that there are 9% of people who have an invasive test, taking a significant risk with what might be a non downs baby and then choose not to abort.

My BIL has a brother with DS and even though he is healthy, never been ill, is articulate, has an office job paying more than minimum wage (and travels there himself on the train) by BIL would still abort a DS baby.

What I personally found strange was just the fact that you'd be hard pressed to find anything that 91% of the population agreeed with... so to me it seems slightly incredible that there is such a huge majority.

Yes, of course it is only a % of those told. But still :(

Oh CP was probably a bad example as it is hard to diagnose pre-birth, I should have charified that I mean that there doesn't seem to be the same type of stigma associated with CP so I doubt personally the rates would be as high.

As Tyler80 says, there are non-invasive tests in development which could tell you this information off a blood test from the mother very early in pregnancy, though, and I think lots more people will go forward for testing if that is the case (a blood test say at 7/8 weeks). Plus these blood tests could be used to test all kinds of things, other genetic disorders, but also paternity and fetal sex (indeed, I think there already is one of these available). Plus if it's only a blood test, people could get the test privately or even online, which is a bit different than having an amnio with a miscarriage risk.

So, for everyone saying they wouldn't risk miscarriage and have an amnio, I think the question still stands, would you find out if it was just part of all those blood tests that you have early on in pregnancy?

Isn't it the case that some foetuses with Downs also show indications of other severe problems which means they won't survive? As there is a difference between choosing to terminate 'just' because the foetus has Downs, and being advised to terminate because the foetus will not live till term or will die very shortly after birth?

What MumNWLondon says.

Why all the fucking faces? It's not your body, not your child, not your decision, not your life. Why are you so distressed by this? If, as onetoomany says, 60% of women don't have the amnio, then the majority of children with DS are actually being born not being terminated (if my creaky maths is right) so it's hardly 90% of foetuses with DS are being terminated. And even if it was - not your life.

I didnt have the triple test (or is it double test?) during my pregnancies because I wouldnt abort BUT I am the only person I know who didnt have them and I find ti hard to believe that everyone I know would have aborted but maybe not I suppose going from these figures.

I always believed that I would not want to even test for DS. I am a teacher and a few years ago I had 2 children with DS in my class in a mainstream school. I had a wonderful year working with them.

However, while I was pregnant with DD1 my midwife suggested the test and pointed out that it also looked for other conditions too, as it was only a blood test at first I agreed assuming it would come back fine. Terribly it showed there was a very, very high risk of trisomy 18 then the amnio showed it was actually trisomy 9. DH and I made the most awful decision ever and I had an abortion at 24 weeks. We were told it was unlikley I would carry to term and if I did the baby would die due to many complications quickly.

It was terrible, I never believed we would make a decision like this, but you do not know until it happens to you.

We now have a wonderful DD who is 19 months and I am pregnant with a DC, due in 2 weeks. It was the right decision for us at the time, we went through hell.

So, no I am not surprised at the rate of abortion at all. You don't know what you would do until you are faced with the decision.

Sorry a bit of an essay!!!

"stigma associated with CP so I doubt personally the rates would be as high."

Its not a stigma. It's the fact that peopel with Down's Syndrome will, by definition, have some degree of learning difficulty. Thie is not necessarily the case with CP.

And anyway - it's completely fatuous to compare the two.

We wanted testing so we would KNOW, but not at any risk to the baby, to have the nuchal scan would have meant a long drive and I felt to ill to go anywhere and they talked me out of the blood test on its own.. since I wouldnt abort anyway.
20 week scan all OK, and hope we continue to be so.

Re the CP, I have a good friend with Cerabral Palsey she has recently passed her driving test, rides her horse (for up to 25 miles :o ) and has a decent clutch of GCSE's.
However I have woorked with children who's disabilities mean they could never lead independant lives.

And I cant spell.