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?

I accept children and adults with DS, why wouldn't I?

The interesting thing about this thread,5 candles,is that those of us with sn children,or those of us with sn see it in really POSITIVE terms.We are not saying it is easy but we are positive about our children.Are you inferring we are all in denial or are all somehow living in some airy fairy utopia?We deal with it day to day yet we are still positive despite the fact we know it IS hard work at times,just in a different way.My nt child is currently more difficult than sn one.I am not naive enough to think this will be tha same through all the years to come but I would never not want her now she is here,she isMY DAUGHTER for better or worse.We want our children to be acknowledged as just that CHILDREN,not LABELS of a specific condition with loving/fuuny/angry/sad/aggresive/delightful/happy/sad traits that express themselves in individual ways.Not second class citizens.

Fanjolina - are you inferring that just because you see your life in positive terms, the decisions of ALL others not to choose to have your life must be wrong?

great link, JJ. thanks for that!

parenting a child with SN is like parenting any other child - parenting every child is different, even within the family.

as people have tried ad nauseum to explain.

i'd also really be miffed if i found out my child's teachers (well, she's been retained at stage so she's still in a nursery with an ASN, that's Scottish for SEN unit attached), keyworker or caregivers were using her and her family to prove how much they know about SN and parenting a child with SN.

in fact, if i found out one of them was doing such i'd take it up with the council or the appropriate medical authority. it's unprofessional, to say the least.

Well I think the link is relevant for those who would want all the tests anyway. Because if you come from a "I couldn't have a child with DS" viewpoint the loss of 2 non-affected fetuses is a high cost for discovering 3 with DS. NIcolaides describes it in the film as 'unacceptable'. And that information is not given to women on the testing treadmill.

I think the child in the film kind of proved a bit of a point wrt to wannabe's OP though as my god that child was able! She was streets and light years ahead of DS1, yet because his condition can't be tested for people don't get as stressed about it during pregnancy as they do about something like DS.

I was given that information jimjams

and I really think it's silly to say that (all) Obs do not know about DS

No,I am not saying that at all,but the view of children with additional needs on this thread is very polarised between those of us who have these children and those who don't,even those who don't who work with such children which is in itself somewhat more saddening as I would like to think that such individuals would have a positive not negative view of our children

What info were you given bunde? That the risk of m/c was 1 in 100? I think this new research paints a slightly different picture of the risks.

I also have found that parents aren't given information about things like mosaics before CVS (and it is relevant- and I have seen people end up in a terrible muddle post CVS because they weren't given that information). OK those sorts of things might not happen very often, but having spent quite a long time on phone calls trying to explain to someone what the test results meant I have seen the emotional mess that insufficient before and after counselling can cause.

Yes, because there's a test people worry more about it than they do about things for which there's no test, partly because where there is a test or the option of a test it suggests a choice which therefore implies the responsibility of making a right or wrong decision to go ahead with something. Ignorance truly is bliss, often. This is true across so many things though, it's not particularly specific to this issue.

I got the feeling the OP was asking more of a rhetorical question though, and fishing for answers on the lines of how the people who choose the tests have poor attitudes to disability, and this thread was supposed to be (and mostly has been!) a good old vent about how crap society, and those people in particular, are. A bit like the way threads like "it baffles me why people don't even try to bf" are really more rhetorical, and are about examining other people's attitudes in order to feel better about one's own enlightened ones, than they are a serious search for information to explain other people's decisions. (I say that as someone with strong views on bf in general and the politics of it, by the way - but that kind of thread is often not particularly helpful in actually changing people's attitudes as it often seems to be more about criticising the people making the 'baffling' decisions than it is a sincere and humble enquiry into why some people make said apparently baffling decisions.)

rhetoric schmetoric.

I personally feel that this issue is slightly MORE important that whether or not you choose to breastfeed,and I breastfed both of mine.Harrumph.!

I do not see it as a merely rhetorical issue,but allow for the fact I am somewhat partisan in this debate.Am very glad Wannabe posted it as it has opened up an important debate that I hope has been useful.

I am wondering if 5 candles is doing a thesis/dissertation on attitudes to disability [WINK]

actually I do have a child with special needs (untestable for) If there was a test for his condition and people chose to terminate for it, I might feel sad, and I might feel they and society were missing out, but I hope I would still feel it was their right to make that choice and to decide if it was right for them.
TO be honest, my dh and I have often said we are glad we have him, because even though we can be useless, impatient, horrible parents, he could have much worse. His condition can make him hugely unreasonable, clumsy, frustrating to deal with, socially very strange etc (as well as wonderful, original, funny, gentle etc) so I'm sure some people actually couldn't cope and would be utterly miserable.

Of course it's important. I didn't say it wasn't important! I'm just not sure this thread hasn't always been more of a vent rather than something intended to be an open-minded exploration of the issue, that's all.

The people who are experts in the experience of making a decision about antenatal testing and whether or not to terminate are those pregnant women who make the decisions - NOT the subset of women who (with or without testing) happen to have gone on to have children with special needs.

Those women deciding about tests, and those women alone, can report back on their beliefs about themselves, their future lives, what they think their children's lives might be like, what they know about tests, and all the other things that drive them to make one decision or another. You may well believe they are wrong about what they think they'll experience with a disabled child - fine, tell them more about what it's like for you - that really needs to happen more. But then also accept that what you report back about your child's life, even in detail, is still only going to be one part of what goes into a pregnant woman making a decision and is unlikely to just override everything else if she has a lot of other factors making her think tests would be a good idea.

again

Interestingly research states that when people have experience of children with or families who have a member with down syndrome they are more than 60% more likely to continue with the pregnancy after having the diagnosis.

So if decisions are not made in ignorance then how does this explain this fact?

that is to come back to the question asked with regards to down syndrome.

Are you watching the link as you're commenting riven? You'll probably find Dominic Lawson says what you think (more or less) at the end. I thought it was very interesting that the interviewer assumed he must be catholic (subtext: only someone totally anti-abortion could want a baby with DS).

I was pleased to see that Nicolaides inserted the words 'if a woman wants the tests'. Important point.

ooh yes riven I cringed every time the reporter said that. You see I was asked about my 'downs' pregnancy by a medical professional - I replied I did not know what that was but I was happy to talk about my pregnancy.

I had an amnio & was told the risk of miscarriage was about 1 in 100 which was about the same as the risk of something being wrong with ds. It certainly seems like the risk of miscarriage is significantly higher than that, assuming this new research is accurate of course & we don't read something next week which contradicts it. I discovered after my amnio that someone I knew had miscarried because of having an amnio. Whilst I'd known about her miscarriage I didn't realize it was linked to an amnio & would certainly have thought twice myself having been confronted with the reality rather than just statistics. Just out of curiosity, do any of the mums with sn children work as both my husband & I work full-time & have to work full-time & I wondered if that's possible with an sn child given the comments about lack of support.

It's still 1 in 100, but very few 'high risk' results from screening will translate into an actual baby with DS.

I work full time, but in a very flexible role (I come back to meet ds1 from the bus, then work again when he is in bed). When I finish what I'm doing in 2 years time I will be looking for 2 or 3 days a week, or working freelance. Although tbh it is generally far easier to find childcare for a child with DS than for a child like my son, because inclusion schemes are fairly accessible to many children with DS where as my son needs specialist schemes and environments.

Please don't misunderstand me fanjolina. I AM positive about people with disabilities. I do understand how much parents love their (disabled) children and wouldn't be without them.

BUT I am also positive about choice. In that I strongly believe that people should be allowed to terminate a pregnancy BEFORE the foetus becomes a child.

I also have said many, many times as have others that it is possible to be positive about your child, love your child, not wish to be without him or her but still wish that you'd had the option of terminating the pregnancy before that child became a child.

And I am glad that you and others on this post are so positive but there are people who although they love their children are not so positive and ARE miserable. You cannot speak for ALL parents with disabled children. Sometimes loving your child is not enough to prevent you finding life unbearable. And there are many parents who feel like this (even where their children are not disabled).

But I do worry that dismissing or trivialising the problems that SOME disabled children have (which IS happening a lot on this thread) and that whole attitude in RL will have the very sad effect of making some parents feel more guilty because they are NOT coping, do NOT find life or caring for their child joyful, ARE miserable and devastated.

It is wrong and really quite offensive to suggest that all of the problems with disability (and I mean some serious disabilities not all) are just a question of perception or prejudice.

I HAVE spoken to parents and read about them who are really very depressed. Suicidal even because life is just so very,very hard for them because of the particular needs their children have. NOT because they don't love their children. NOT because they don't have joyful moments but because endless sleepless nights, lack of support and respite care, feeding, changing nappies, having to give up work etc etc just becomes so hard. I am not saying this is everybody's experience and I am not saying this applies to every sort of ability but I do know parents with children with disabilities and people who are disabled who would find this whole emphasis on joy and enrichment and the lack of mention at all of the harsh realities extremely at odds with their experience.

'How is being dead better?' For some parents, having a TOP is ending their childs life but that child would die anyway. If they went ahead, neonatal care may be withheld and that decision ends the childs life also. In severe issues (maybe anencephaly, Potters syndrome etc), it is simply the mother's body keeping the baby alive, the baby cannot survive alone. Many people beleive it unfair to bring a baby into the world that will suffer in these cases.

In the case of Downs, when I was told I was high risk and yes I was terrified for while, What made me decide not to have an amnio was the risk of m/c, knowing what a late TOP involved and not being willing to go through that for anything other than lethal issues, but mostly there being a boy with DS at my DC school who I could tell brought a lot of joy to his parents and was just like the other kids in more ways than he was different.

Our societies pursuit of individualism and selfish capitalism doesn't help either. Everything (wrongly imo) comes down to money. I read a very disturbing government or NHS article about how ante natal testing was only worth doing if so many babies with DS were terminated. I would prefer a more community minded less materialistic society and am not sure how I feel about testing. In my case my high risk result was false positive. In the pregnancy which we discovered severe issues it was at the routine scan we found out, alot of people are unprepared for bad news as we were.

riven

I asked about work because my son goes to nursery full-time but if he was sn he couldn't go to that nursery. I know where I'm from in the UK there are a few special schools but I don't know if they cater for children under school age. I was just curious as the few people I know with sn children are SAHM.

Thanks jimjam