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?

fivecandles I understand where you are coming from.
I think there are alot of people who feel that termination could or would be appropriate in their circumstances. I also see that the majority dont want to terminate as would be happy to have a baby with a mental/physical or terminal disability and would do so even if there were tests available to show it. It is all to do with individuals personal choice and maybe there knowledge on disabilites and the fact that some parents would just be happy to have a child with or without a disability or illness.

I do however think the statistics are higher for people choosing not to terminate as there are many people who would not actually say out right that they would terminate or have terminated due to reactions/opionions of others. I am not saying that there are more terminations than not but just some people may choose not to inform anyone of their decision to terminate.

wannabe I dont think your statement re personalities is right. I do think that the disabilities these people have usually effects their personality rather then them actually having a personality problem! I think alot of people with any disability that has occured later on in life would be more prone to becomming depressed as would have previously lived a different lifestyle prior to the disability, thus not saying someone born with a disability would also not go through this as some point but usually they would have been used to having to live in a certain way, or dealing with peoples reactions but in later life it can become a complete lifestyle change with care and help that had never previously been needed. Depression is usually connected with the onset of symptoms or events happening in ones life.

HEATED - think your query got a bit lost in the general business of the thread - I think it's absolutely fine not to ask questions, and wait to see if she wants to make reference to any special needs/health problems her child may or may not have.

".....But when dh said, "what's wrong with her son?" and I didn't know, I thought hold on, actually have I been unsupportive in not mentioning it and for her it's the elephant in the room in our conversation? Grateful for your pov."

jimjams I just don't understand why you want to dismiss and trivialise people's real an very well documented problems. Do you not get how that's offensive?

China's not great with disability? Oh well, China's not great with a lot of things.

Depression is common with disability? Yeah but it's common anyway isn't it.

Odd, odd, odd that you can dismiss this stuff so easily.

agree with tc, it might all be a bit raw for her, would let her tell you.

5candles
why? jimjams just spoke the truth

Oooo, JJ, I'd like to try surfing!

That looks fun.

"I love the way that being the mother of a disabled child makes you able to comment on the needs of a disabled child you've never met!!". pmsl.

newsflash for you fivecandles. I do not have a disabled child.

And that is clear evidence that you have not been reading the posts on this thread.

But here's how it is.

I am visually impaired. something which has been pointed out numerous times on this very thread. Not only that, I am totally blind. So I think I have far more experience of the "needs" of a blind student thank you very much.

oh and, I do have a child. and a husband. And until I became a sahm I had a responsible job too. imagine that. And now I am a sahm I go into ds' school one day a week where I help out, and nobody seems to have issue with that. Oh and I am on the PTA and a governor too.

But oh my life is so terrible.

So now I must go and slit my wrists.

'but it was nothing to make a fuss over.'
That's right jimjams if you say so it must be true. Have you taught A Level English Language recently to a blind student? Perhaps she should have just pulled her socks up and got on with it just like my dad with MS and my ex dp with Muscular Dystrophy and every disabled person living in China with depression.

What planet are you on?

Next time you have a complaint or are feeling unhappy how would you feel if someone told you to stop making a fuss?

heated to quickly answer your question - I think it depends on the relationship. I usually mention down syndrome only because it is pretty obvious dd1 has ds. The best thing you can do - listen, chat, treat as you would any other parent. That is what I want - I am not some strange creature because I happen to have a child with ds ( actually I was pretty strange pre dd1) I am just a mum doing it like all mums do. I love my children - they all drive me nuts sometimes and other times my chest hurts from puffing it out with pride in their achievements and in looking at the wonderful little people they are becoming. If the lady mentions her babies condition - then go away - do some research - don't rely on her to educate you iyswim. I really appreciated the number of friends who either had life experience with ds or who went away and did some research.

hth heated.

(heated or ask in sn if you are not sure about the condition there is always someone who knows in there)

five candles who is being offensive now???

I find my depression a greater disability than DD1's dyspraxia and all its associated learning disorders.

What?

Anyway - abck to the original questino - what is it about ds that makes it such a focus of antenatal testing??

No one has really answered me - what aspects of ds make it something to be afraid of??

to 2shoes.

now I reallymust go - children are chewing my arm for breakfast and we need to get going to school - that would be mainstream school for dd1 - the child with sn!! Who has had such a negative impact on our lives.

Hurrah for Edisvold!
Yeah, come on, what is it about DS that scare people so much?

I think that has been answered quite a few times.

Actually DD1 can be quite scary. No really. She does a great impersonation of a monster!

You know, I discussed this with the mother of a child with DS the other day.

We couldn't honestly come to a conclusion.

She thinks it might be looks-based, because it's easier to spot.

Has it, really been answered a few times??? Can someone cut and paste and compile a list of what it is that is scary about Down's syndrome. Or can you rememebr specific points that you would mind pointing out to us again, sorry and TIA.

It's not that its more scary than other disabilities just that it's testable for.

Some concerns which have been mentioned:

1.) Nearly half of people with DS have heart defects which may be serious. May need heart surgery on a baby.

2.) Gut problems and problems with vision etc.

3.) Learning difficulties.

4.) What happens after the death of a parent if not independent?

5.) Lower life expectancy

6.) Possible issues with finding appropriate school and childcare

7.) Lack of support

8.) Problems with other people's prejudice and attitudes.

9.) Impact on siblings and family life.

Thank you TotalChaos & Eidsvold for the advice & perspective, you echo my instincts but I was concerned she'd think I was being callous. I'm not a close friend but we share our worries and concerns about dcs starting school. Since I have no idea what the condition is - it's not DS - I haven't looked it up.

Great, thanks for that fivecandles.

Just for fun and for my own benefit I'll answer those questions in my own sweet way!

1.) Nearly half of people with DS have heart defects which may be serious. May need heart surgery on a baby.

Yeah that sucks. Luckily wasn't the case for me though. However as far as I know babies respond and recover remarkable well from any heart surgery that be be required.
ANyone have any stats on the sucess rate on heart surgery on babies born with Down's syndrome?

2.) Gut problems and problems with vision etc.

Hmmm yeah, but not really so serious as to warrant not wanting the child to be born. Gut problems usually minor and not lifelong and vision, well yes children with DS can be prone to being long sighted buyt a pair of glasses rectifies that, no big deal at all is is.

3.) Learning difficulties.

Yep, that's right. But again, whatever on that one really. You get a statement, your child gets a teacher assigned just to them, they fit into mainstream school and learn everything their peers do, just at a slower rate.

4.) What happens after the death of a parent if not independent?

An incredibly high percentage of people with DS do live independently. If not, they live in some sot of centre where they are able to and encouraged to have as independent life as possible.

5.) Lower life expectancy

Bit out of date that. Life expectancy gets better all the time. Living to 65 /70 is better than not being given the chance to live at all anyway doesn't it!

6.) Possible issues with finding appropriate school and childcare

Ballacks to that one! Not an issue at all. Never ever heard of anyone having a problem with this. Sure if there was there would be an uproar and problem would be sorted. Children with DS do very well in mainstream education.

7.) Lack of support

??? From who? Personnaly speaking on this one I had almost too much support!!!

8.) Problems with other people's prejudice and attitudes.

Fuck em. Not that I've had any problems. Never had anything but positive attitudes from people really. nd those that have been iffy - fuck em, their loss, move on. Prejudices exist throughout life. If we worried about that we'd never do anything. People are prejudiced about all kinds of shit, that's life. Not exclusive to DS.

9.) Impact on siblings and family life.

Again, not aware of negative impact. On a personal note it doesn't exist. Will it later, will DD2 & DD3 react in a negative way, hard to imagine. My sister has cripplying awful terrible OCD. Never had a negative impact on me. I know people of my age whose siblings have various SN's, never got any negativity from them about it. Guess you can't rule that out but don't think that's a thing that a parent of a child with DS should be worried about tbh.

To answer Thomscat, before I had children and felt that overwhelming love for them, come-what-may, my worries would have been:
-that I wouldn't love them (did have bonding issues with dc1)
-that there would be a strain on our marriage
-that I would never go back to work, have to care for them 24-7, be knee deep in incontinence pads and live a life of unremitting poverty.

I do of course realise the naivete and ignorance of some of this, but they would have been my fears then. Having children I have a somewhat different perspective.