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 don't see how an older disabled child going into residential care is necessarily any reflection on someone's ability/inability to cope. It's about other people being able to provide in a way which parents cannot, and as parents we all do this throughout our children's lives.

I send my child to school because there are other people out there who are far better qualified to teach him than I ever will be. When he grows up he may attend university, where once again someone else will educate him to a level at which he might have a career.

As parents we are not expected to be with our children 24/7, we are not expected to be able to do everything for them. So why should that be any different if you have a disabled child?

For the 92% who do abort I guess their reasons would be complex and varying but you rarely hear their v-p.

If I did have a 3rd child, given my age, then yes I'd opt for testing. Not infallible, some risk attached but given the person I am, I'd want the information.

When I discussed this with my MW it was clear that she had no grasp of statistics whatsoever. Maybe some HCPs are just not numerate and have not been properly trained? That could explain why their explaining of the risks is so poor.

the talk of residential care is a red herring.
it is not about coping.
I know young people who stay at dd's school during term time, the school has 24/7 nurses. no parent can have that level of support.
my dd will one day leave home and go into some kind of residential home, because she will be grown up and will want to leave home. the same way as one day ds will leave home.

I'm going to read this thread properly when I have a quiet moment. Maybe I'll learn something.

For now - your question, and the answers it throws at me, I have struggled with many, many times.

Having a DD with Down's syndrome and knowing how many people terminate their pregnancy when they discover they have a child with DS breaks my heart.

I often wonder if it's the Down's syndrome they are terminating, cutting the disability out of their lives. Sometimes I wonder if they are can see that they are actually cutting their child, their son or daughter they were destined to have, that was due to born to them, their perfect son or daughter, who happened to have DS, out of their lives. A child who happened to have DS. But could just as easily be born with any number of additional needs or grow up to have terrible problems etc etc.

My daughter is my daughter, no more no less, she is who she is, she was always going to be Charlotte. She just happened to carry over an extra chromosome and so the person she was destined to be happened to also be one that has Down's syndrome.

Can you imagine on the noment of her birth me saying 'oh she has Down's, right sorry, not up for this, I don't want her, could you take her away please'.

Why then is it acceptable to do it while she or he is still inside the mother?

It's not that I'm not pro-choice. I am. But I do struggle with the negative attitudes and easy manner white coated professionals discuss terminations.

It makes me sad that if terminations weren't so easily offered up to parents that there would be so many more people like Charlotte in all of our lives and the world could only be a better place for that imo.

Anyway, a very sensitive subject and one that I am perhaps to close to to be able to comment really.

And if I was ever going to preview a post it should be now, but I'm not going to.

I'll just say that I know people are terrified of their child havig Down's syndrome but I'm here to say - there's nothing scary about it! It can be hard work sometimes, but it's never ever scary. It's just about being a mum, to your child, a child that turned out to have Down's syndrome. That's all. Nothign scary about it. Just how it is.

My sister had horrific OCD. Doesn't really leace the house, or the bathroom. Doesn't read, have friends, never worked, had a lover, nothing. It's hard. Bloody hard, on all who know and love her. She's not happy. She is suffering. However she is generous, articulate, funny, sweet, caring, and we all adore her and she us. If OCD could be detected at the fetus stage should my mother have been offered a termination. God forbid.

My friends brother died of a heroin overdose but not before dragging his family through hell first. He still deserved a shot a life though.

Anyway, I ramble.
Hope I don't regret this all over the shop post!

Heated, yes. I can see why. TBH there's so much judging of people who consider terminations and dismissing of concerns about disability that you have to be pretty brave even to say what you MIGHT do hypothetically.

I think it's a terrible shame because I know for a fact that there are so many parents and parents to be and not just those with children with disabilities who would love to ask for help or admit that they're struggling but don't feel they can for fear of being considered failures or not normal parents etc. Awful.

I was sort of hoping you didn't see this one, TC. But as usual, I like the cut of your jibe .

fivecandles, with respect, the point is that all the parents on children with SN on this thread have to fight very hard, constantly, to get the help and support their children need and deserve.

Sorry fivecandles - that's not my experience at all. People have been very willing to share with me that they would terminate a child like mine. Repeatedly. I have no idea why. Really if ever there was a case of 'wrong audience' that would be why.

Parent's don't ask for help because they are worried their child will get taken away from them. Or they can't cope with the system. I was asked today why I didn't ring during the summer and ask for more help. The answer? Because I didn't have the energy to deal with the system. Letters and phone calls go unanswered and unreturned. I already had one complaint in the system and couldn't be arsed to add another.

It is often easier to struggle on with no help than to take on the beast of the system that you need to engage in order to access the help. That's nothing to do with the child. That's crappy social care systems run by people who couldn't organise the proverbial piss up in a brewery.

thomcat my friends little boys bm did just that when she discovered on the delivery table that her son had down' s syndrome

luckily that enabled my fab mate to be a fab mum to a fab little boy

not that would be why. 'that would be a case of it'.

haven't read the whole thread BUT one thing that angers me and which I have had an argument with a genetic counsellor over is that a raised nuchal measurement can be an indicator of so many other conditions - including heart defects. Down syndrome is but one condition which can be indicated through nuchal translucency screening. Yet the focus is always on down syndrome.

I think we are missing the point wannabe raised - lets take it back - what is so scary about having a child with down syndrome??? To those who go on about burdens etc. The medical profession push a fear of down syndrome more than anything. I wonder how many people are actually told that nts can indicate a number of conditions - I would bet my last dollar - very few.

I also resent the questioning and stupid looks I get when asked if I knew before dd1 was born. It infuriates me no end. It is by and large again the medical profession - what does that matter in dealing with her care - she is here - do her hearing test and lets move on.

Sadly - I am not surprised by the comments of some on here - I have even had someone told me - they would have had one like that but they chose to terminate!!

So I ask - How life limiting and burdensome is down syndrome?

Chacune - yes it does happen, but as you say it at least gives other opportunites to be a parent to that child.

FiveCandles - like JimJams, I have had private off MN emails with people, who I met through MN re their child having Down's syndrome. I talked to them about it and a few went ahead with the termination and discussed it with me openly via email. I supported those women and hope in some way I may have helped them deal with the decisions they came to.

My DD2 has a genetic condition that isn't tested for antenatally as it is so rare. We found out she had it when she was 4 weeks old.

If someone had told me when I was pregnant with her that she has this condition would I have terminated the pregnancy? I doubt it but I don't know for sure as the fear of the unknown may have clouded my decision.

But I can honestly say 100% now that I am so glad I didn't know - otherwise our lives may not have been enriched by her being here. Yes life is a bit more difficult than it may otherwise have been, and yes I know she will probably never live independently. But she has brought so much love and laughter into our lives, and the lives of her sisters and our friends and family I wouldn't be without her.

I don't believe that every parent of a child with Downs refuses antenatal testing on their subsequent pregnancies. I don't know, but I would guess it is likely that some at least do, and would terminate. Just as people who have had a child with CF or similar disease would terminate if they had another child with the same condition. It doesn't mean they don't love their existing children. It just means they feel unable to cope with more children with extra needs for all sorts of reasons - emotional, physical and financial. Would people be happier to see other people forced into parenting children with special needs? Do we say to potential foster carers/adoptive parents - you will have the kid you are given, regardless of your ability to cope, and if you can't cope, you are unfit to parent any child?

I don't believe that every parent of a child with Downs refuses antenatal testing on their subsequent pregnancies. I don't know, but I would guess it is likely that some at least do, and would terminate. Just as people who have had a child with CF or similar disease would terminate if they had another child with the same condition. It doesn't mean they don't love their existing children. It just means they feel unable to cope with more children with extra needs for all sorts of reasons - emotional, physical and financial. Would people be happier to see other people forced into parenting children with special needs? Do we say to potential foster carers/adoptive parents - you will have the kid you are given, regardless of your ability to cope, and if you can't cope, you are unfit to parent any child?

I will be well past middle age when dd1 is in her twenties. However - she has the ability to live independently and to hold down a job, get married and so on - how do I know - I have seen it, experienced it. I know a number of young people with down syndrome who are married, work and live independently.

As to siblings - I had a very interesting conversation with dd2 yesterday - she told me when dd1 and her had their babies - dd2 and dd1 would have to get in the pool with their babies when they went to swimming lessons with her swim teacher. THey would also live near each other and visit and have their babies together!! Okay dd1 probably won't have children but - dd2 sees no difference between herself and her siblings. She does not see dd1 as a burden - she is just dd1 - as dd3 is just dd3.

My ds2 has a chromosomal abnormality that is thought to be nearly as common as downs syndrome. It just has such a wide spectrum that a percentage of people never know they have it.

For us he is the light of our lives, he makes us smile, laugh and cry. Exactly like DS1 who is 'normal'.

I cannot stand the thought that parents would want to abort a child like mine because they may be a burden. We had heard that there has been new research to detect the syndrome that he has at the twenty week anomoly scan with facial imagery. Initially I thought how helpful it would have been to learn about the syndrome before he was born to get the appropriate help in place. Then I realised that terminating a pregnancy at this stage of pregnancy would be allowed because of the syndrome.

I'm sorry to those who disagree, but it is a fear of the unknown and the only people who know exactly what it is like are those that live it. Therefore of course they are the authority.

The main thing that makes mine and dh's life harder is other people's attitude to our beautiful child. Thankfully these people are few and far between.

actually i refused further testing with dd1 - even though we were told at 20 odd weeks if she was born without down syndrome it would be very rare.

I refused further testing with dd2 even when her 20 week scan indicated that I had a higher than usual chance of her also having ds.

I did have a nuchal translucency screening with dd3 - why because it can indicate heart conditions - why cause we had just learnt that dh had a congenital heart condition that was not discovered until his 40's. Despite my result for nts being 1 in 962 - I was still pressured by an arse of a genetic counsellor who spent the better part of an hour trying to tell me what it is like to have a child with down syndrome despite the presence of dd1 in the room. I was also asked when I wanted an amnio cause surely I would want to know.

I told them we were going no further and would just ask for them to look closely at the heart again at the 20 week scan. Actually I was a little reluctant to have the nts BUT i am so glad I did cause I could now see how the medical profession approached it and the things that people would hear from so called professionals.

but if you would feel unable to deal with another child with disabilities should you even be contemplating having more children? My personal opinion is that you shouldn't.

As I said further up this thread, my mum terminated a pregnancy because she didn't want another disabled child. And my disability is by no means life limiting/hard to cope with - I do not have a diminnished quality of life. But for whatever reason, she didn't feel that she wanted another disabled child.

She was sterilized at the same time as having that termination. My personal feeling is that if she felt that strongly about not wanting another disabled child then she should have been sterilized when she made that decision. apparently they discussed it and just never got round to it.

i was also gobsmacked at the number of people who were surprised we were having more children than dd1!!! Especially given how old i was when I had dd3.

Well, maybe you just want a child who stands a decent chance of staying alive past childhood. I don't think that's such an evil thing to want.

well, I am 34. and I am disabled. but I am "normal" because the only disability I have is that I cannot see. And yet to my parents that was considered enough of a disability that termination of future pregnancies was considered the only option (screening not available then).

and iirc eidsvold's dd will live way past childhood - ds not a life limiting condition if I remember correctly? although obviously the associated heart defects can be, but surgery surely a better option than termination?

By mabanana on Mon 15-Sep-08 22:43:33
Well, maybe you just want a child who stands a decent chance of staying alive past childhood. I don't think that's such an evil thing to want