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?

mabanana....in the end we all could be seen as horrible, weak or selfish whichever way we think....iykwim...if you knowingly have a child with a disability then people could say you are irresponsible, blablabla...but at the same time, if you decide to abort your Fetus after finding out that they will have a disability, some people may think of you as selfish and all that...
in the end we all have to do what is right for ourselves...
I do believe there should be more information out there for all, that explain more about the consequences of the tests and about the conditions the tests are testing for....and it would have to be unbiased information....
like I said earlier...I find it shocking that women are offered abortions when a scan shows a cleft lip and/or palate....I know the reason is, because a cleft lip//palate can be a sign of some syndroms...but surely that should first be cleared up...because, a lot of the time/maybe even most people with a cleft have just that.

No pag, it's not funny. It really isn't.

I'm glad people are being open about their very real concerns now. That's what I was getting at earlier.

FairLady - an accurate summary. As ever damned if you do, damned if you don't.

Have not read all this, but would like to ask those of you who 'might' terminate for 'disability' reasons, where do you draw the line?

I only ask because my second DD (third child) was born with a genetic condition that there is no pre-natal test for (not that I would have tested anyway if I had known about the condition, before knowing my DD).

Brief history - DD failed all developmental tests and was finally diagnosed with Sotos Syndrome just before the age of 3.

When she was first 'visually' diagnosed, I read all about the syndrome and I felt my DD's outlook was 'not good' (still in nappies at teenage years, don't walk, don't talk).

The portage worker (worked with us since DD was 18 months old) said to me, when the diagnosis first came through and I read 'too much' about the syndrome, that I should not lose sight of my DD and she will always be the best she can.

I like to think of my DD as being on the bus behind, i.e. all people get on a bus to, say, (anywhere), but my DD's bus is running a bit behind schedule but she will arrive at (anywhere). I use this context in the way that all people are on a bus to 'toileting/walking/talking' but my DD's bus is running a bit behind schedule. Saying that, her bus may break down before she reaches (anywhere - walking/talking et al) but as long as she is nearly there, everything will be fine.

Now 4 years after diagnosis, she is walking / talking / swimming / trampolining / sociable / out of nappies (at age 4) / goes to mainstream school - i.e. DOES EVERYTHING THAT MY OTHER 2 CHILDREN DO.

She has not hindered my life in any way and enriches it. She does have 1-2-1 help in school but her 1-2-1 is not just helping her, although she is funded to help my DD, if she feels my DD can manage on her own, then she helps other children who may be struggling.

What I am trying to say is that, yes, my DD2 is 'special needs' and before I got to know her capabilities/how far she had come, I did worry about her future/my future/her siblings future but now 4 years on I know her future is fine.

Her condition is not life threatening, will not deteriorate over time and she will always be wherever she is right now, if not better.

She is average for reading, writing, is fantsstic on a computer, goes to after-school club, etc. etc.

I work part-time and she has not held me back in any way, but if anyone looks up Sotos Syndrome they may be 'put off' about having a child with that condition.

For me, I had never head of it before my DD was diagnosed and I would not change her for the world.

I am not saying that to 'precious' but I am very interested in where anyone who 'might' terminate would draw the line.

I bet half of you leaving a comment have never even heard of Sotos Syndrome, as I had not.

I think for me, fear of Down's Syndrom is partly down to some of the reasons named already (worry about a child who may need support after we're dead and gone, etc) and partly down to a very scary experience with a friend's son who had Down's Syndrome, when I was about ten.

This friend's son was 14, and going through puberty, while I was ten and very innocent, and hadn't been warned about what might happen when I babysat/played the other children. Gideon (the boy with Down's Syndrome) came in completely naked, waving around his VERY erect and mature willy at me.....Now had I been a bit older, or perhaps had more warning, I might have coped a bit better. As it was, I was terrified and can still remember exactly how it looked. Not sure I'd ever seen an adult willy before! And because I had a sense that this wasn't something 'acceptable', I didn't tell my parents for years.

So better education for me at that time about Down's Syndrome would DEFINITELY have helped, rather than leaving me feeling shaken and terrified of the Syndrome completely.

However - people on MN and this thread, together with some of the research I did when we had our CVS, has (I hope) helped to allay some of that visceral fear I felt. And perhaps if I'd got to know Gideon better at the time, I might have seen more of the positives he brought to his family. As it is, sadly all I saw was my fear, and his parents' divorce (not sure if it was connected, but in my mind it was).

So not saying that everyone has had an experience like that in their lives, but if all they've seen is the negative perception that society paints, then I agree that they are going to feel deep fear at the prospect of their child having Down's Syndrome.

In answer to your question - I would have considered a termination if DS2 had had Edwards Syndrome because I was told at the time that if he had Edwards he would either be born dead or die very shortly after birth. Having already given birth to DS1, I knew I would not be brave enough to go through all that again knowing (as I thought was the case) that I would then have the heartbreak of my baby being born dead or dying.

When my ds2 was at risk of 1;9 of DS I had a CVS and would have terminated had he had a chromosonal defect.
My choice is little to do with the quality of the life of the fetus (at 12 weeks) and more to do with the effect on my life and that of DS1 who was 14 months when DS2 arrived. I look forward to bringing my children through childhood and to reach adulthood and independence. The added risk that I may be an active parent for years after adulthood was one I would not be prepared to take, at all. My children all go to bed by 7 o'clock and that suits me just fine.

I don't think the mis-information and in some circumstances pressure that the medical professional can put on parents can be overlooked, when discussing the issues of ante-natal testing.

After DS2 (who has downs syndrome) was born, I was referred to a gynacologist as after delivery my placenta didn't detach and I had to have immediate surgery.

I wanted this appointment to dicuss why my placenta didn't detach, what the surgery actually entailed, whether it would have any adverse impact of being able to concieve in future and if not if it would have any impact on future pregnancys/deliveries.

However virtually the whole appointment was made up from the gynacologist telling us the risks of having future children with downs syndrome and what tests they would be giving me.

Not only was this highly infuriating as this wasn't what I asked for the referral for, but also somewhat confusing as we had already told the gynacologist when asked, they we never knew about DS2's downs syndrome before birth as we had declined all the tests offered, as we would not act on any results regardless.

I couldn't understand why this professional hadn't listened to what we said or our opinions and quickly came to the conclusion this was because she believed she knew better than us, when it came to decisions about myself and my family.

I can't help but feel these sorts are attitudes are not unusual within some medical professional circles and that unless you are very strong willed and know what you want, it could be quite easy to be strongarmed into something without being fully informed.

Of course I am not saying that is always the case, but that doesn't mean it doesn't happen.

I also have first hand knowledge of fear and ignorance when it comes to downs syndrome and the medical professional, as my midwife was to 'scared' to tell me that she suspected that DS2 had downs syndrome and didn't ask for a registar to come and speak to us, until both myself and DH mentioned downs syndrome ourself. Her response to which was 'oh, I am so glad you said that, I didn't know how to tell you.'

Perhaps the other children of parents with terminally ill or severly SN children are far more affected by such divided attention than is ever admitted. When a friend of mine had a daughter with cancer her other children all had a mini crisis of their own.

"My children all go to bed by 7 o'clock and that suits me just fine."

So do both my children who both have disabilities, not sure I get your point here.

My sister had downs syndrome, perhaps I am I lucky that I found it a positive experience?

Either way it certainly didn't affect my opinion on whether ante-natal testing was right for me.

Bumblelion what a lovely post. I love the expresions you use.(might pinch them)

fivecandles
By fivecandles on Wed 17-Sep-08 12:54:08
2shoes I meant for a long time ALL of the emphasiss on this thread was how much joy a disabled child brings with them and no mention at all of the hardships that CERTAIN disabilities bring
I won't copy all your post you are very clever and will remeber what you wrote.
I did think that was what you were getting at.

why should we drone on about the hardships. on mn you can get called an attention seeker for that.
if I was talking face to face with a freind I would or asking fro advice amongst freinds on the sn board, but not a public thread like this.

and Riven I got your humour, but them I do blaack humour.

RE DS & GUT ISSUES. whoops. I have a very knowlegable friend with a son with DS. She believes (from talking to the proper pros) that many many children/adults wtih DS do very well on a gluten free diet. That what they have is coeliacs. But the medics don't bother to treat it because 'oh people with DS have dodgy guts'. Just like they don't treat many severely autistic children with ulcerated guts because it's too difficult. Now there's prejudice.

My very severely disabled 9 year old son goes to his room between 7.30 and 8pm and stays there even if he doesn't go to sleep.

I think comparing the impact that a terminal or chronic illness (with repeated hospital visits - or even very long stays) with a severe, but healthy disability (such as my son's) is completely mixing 2 issues and making a huge mistake. Comparing my situation with a friends, my severe disability is far less intrusive into family life than a long and severe illness in a child. My husband and I both work for starters, my friend and her dh have had to both give up work.

twelvelegs, I could answer for ds(who is 16) bit if you want I could get him to post.
I am sure that would piss on your assumption.

having a sibling with a life threatning condition of course will affect siblings, I should imagine it would be terrifying for them. but hardly tha same as a disability.
(oh and I beat you dd is in her room at 6.45)

Incidentally a lot of my views on the testing procedures (and the inadequacy of the system) come from picking up the pieces when friends have got themselves in a terrible mess - because they haven't been given good information before or after the test results. I would get called because in a previous lifetime I knew a bit about cytogenetics so could explain what their test results meant. Professionals/the system should have been giving this information before the invasive tests were carried out and I didn't feel - as was stated in the video on channel 4 news yesterday- that in these cases women were making informed consent. They weren't being given the information to do that.

DS3 (who is 3) has said "don't tell my brother off, he doesn't understand, he is my friend and I love him".

And ds2 (6) was overjoyed when I said (as a joke) that ds1 could live with him. 'what you mean I don't have to get married to a yukky girl?. What 2 boys can live together? Oh brilliant I'm going to live with ds1 yeay yeay'. He was visibly relieved....

If I get time later I'll link to the literature. The vast majority shows that disabilities siblings gain more than they lose by having a brother or sister with a disability.

Negative effects are found with long hospital stays etc, but someone like ds1 is severely disabled and (touch wood) has never spent a night in hospital. His NT brother has.

So that's one to cross off the guilt list.

oh i must have cut a bit out of that sentence (though ds1's bus was coming) you know what I mean.

I disagree with having the tests. Sometimes the test can show Downs but the baby is born perfectly healthy. How many healthy foetus' must have been destroyed for no reason because of this.

To answer where I would draw the line, DH and me always said we would only terminate for very severe/lethal/bed bound type disabilities...ie anencephaly, potters, harlequin, trisomy 18,13,9 etc. I use to work in a nursing home with young adults with very severe mental and physical disabilities. Some were horrific and I saw the effect on families. I didn't see any joy there to be honest although the families may see it differently? Totally different than someone with LD or DS etc. But these were people tube fed and bed bound and many were in pain. This had an impact on my thoughts to TOP for anything very severe. We decided NOT to have further invasive testing with a high risk downs result though as we decided we would not terminate for that on it's own. Much of that was there is a boy with DS at DC school and he is gorgeous, I think it would be more scary if you didn't know anyone with DS. If there were hydrops/severe heart defects (HLH etc) on top then we may have considered it though. I do know a couple of people who had relatives with downs and would have had a TOP for downs; one because her brother died at 6 months and the other said it was so hard for his parents, but that was years ago. I did read in a genetics book that Robert Winston suggested about half of parents who already have a child with DS go on to further testing and about half of those with positive results go on to have TOP. Not sure the name of the book (and Winston was not the author I don't think but can't be sure)something about the genome project and it was very contraversial.

It's the unknown though isn't it? Testing gives an insight into the unknown but it cannot give certainties. That's why people terminate or don't based on the outcomes of those tests.
Severe SN is very different to an slight affect of ds.

'I honestly think the positives outweigh the negatives'

FOR YOU. And that's good. But there are many people who believe exactly the opposite and act accordingly.

This is so obviously a matter of personal opinion and yours doesn't change the validity of someone else's.