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?

eidsvold, you missed my point. I'm saying that some people know they would not have the strenght to cope with a child with certain conditions. That is to be respected in my view.

2shoes

article here

how the hell do you know how strong you will be until that strength is tested??

To answer your question silverfrog for me PERSONALLY (and my point earlier is that it will vary for every individual) I am as sure as I can be without being faced with the reality that I would not to give birth to a child who would be in pain for its whole life. Any other condition I would have to consider case by case given the particular diagnosis, medical advice and my personal feelings. It's entirely personal and individual. I just don't think it's possible to make generalisations.

fivecandles sorry I don't understand what you mean by this.......

I also think that to make an informed choice you have to be completely informed and that means the bad as well as the good. I don't think it is helpful to anyone to paint a rosy perfect picture because life just isn't like that as a parent even where your child does not have disabilities just as you're saying (and I agree) that it needn't all be doom and gloom either

ALso wonder with you wannaBe how many woman know that for example nuchal fold tests and combined tests can indicate so much more than down syndrome - heart defects are something that can be linked to a raised nuchal fold, other genetic conditions with far more serious impact on family life etc - and not trisomy 13 or 18 - also can be indicated. SO many conditions and YET the emphasis is on down syndrome.

eidsvold, who are you and I to say that someone who believes they have not got the strenght acually has and just doesn't know it??

That's deeply patronising and takes us back centuries in terms of women's rights.

When a woman makes a choice it is to be respected.

again - can I point you back to wannaBe's original question - why the obsession with down syndrome??

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.

Worse that that for me was the way some people's concerns about some disabilities were dismissed as all a matter of prejudice, or perception or ignorance.

I don't think that's particularly helpful to anyone and completely at odds with the experience of a lot of parents with disabled children.

There are plenty of threads about how hard some parents are finding their lives and parenignt ehir disabled children where 'joy' is not at the forefront of the discussion.

And before you start, no I'm not saying that disabled children cannot be as joyful as any other child but to gloss over their particular needs as though it's easy and fun all the time is wrong.

And would have the effect of making people who were not finding their lvies very joyful and actualyl might be finding them incrediblt difficult guilty or ashamed./

Life doesn't come with guarantees - test for down syndrome and end up with a young man who lost his leg due to chicken pox!! You know - that little childhood disease - not much - he now has lost a leg!! What do we do then??

Littlemydancing

very interesting posts.

FWIW I have huge symapthy with any parent being given an indication that their baby may be developing with some kind of disability or syndrome.
What I have been trying to say is that I think that the average parent being told that their child may have Downs syndrome is required to contemplate life with a child with this syndrome ( or indeed with any other disability) on the basis of very little real qualitative information.
That is no ones fault. The Hollywoodization of life and the quest for perfection is endemic.
People are scared to lead a life outside the ordinary which is understandable. Or they are endlessly fed images that show families with SN as little havens of unbearble worthiness.
I do know this to be true because I have the "oh my goodnes, you are so marvellous, I couldn't do what you do" at least once a week.

That does not mean I regard the people who have this reaction as ignorant.I just genuinely believe that until you have a child with a disability it is almost impossible to understand it. That is simply the human condition. We can understand a huge amount but until we actually live it we don't really get it.
I am not being judgemantal. I am just explaining what happened to me - and what I hear repeated endlessly to me by my peers.
It is very sad for us actually as it can be isolating. bad enough to have people not understand but actually far worse to have people think that they do.
A bit like my mother who lost my dad after 60 years. Some people said " I know this must be so hard" when actually thet know nothing. I at least 'knew' I knew nothing .

We all make the best decisions we can. I am not judging other peoples right to make the best choice they can.
I don't know about anyone else but all I have been trying to express ( with little success apparently) is that the life people anticipate with a child with disabilities is not anything like they would imagine.
When DS2 was diagnosed I was terrified about how I would cope. Terrified I wouldn't be good enough - actually certain that I wouldn't be good enough. I read, I researched, I spoke to parents, I spoke to paeds. I was still terrified. The only thing that showed me that I would actually be good at this was doing it.And the only thing that taught me that it is just parenting was also doing it.
As it turns out I am fabulous

I think the same technology that saves very poorly babies also allows us to find out in advance if a baby is going to be very sick. Some parents have to decide not to use life support as the baby would not have a quality of life (in the parents/doctors opinions).

Some people would see TOP for disability/fatal issues (or any TOP) as killing a baby, some would see it as preventing the birth of a very sick baby. It gets difficult to say TOP is OK for this but not that, what it comes down to is if abortion is legal then it is up to the mother/parents to decide whether to go ahead or not. I feel uncomfortable with some 'social' abortions (I would prob class gender in this bracket) but at the end of the day it's up to the women involved to decide what they can live with and whether they feel a baby would have a reasonable 'quality of life'.

Really, I think it comes down to what you think of termination in general. I don't get that some people on this thread have said that they are OK with 'social' abortions but NOT TOP for severe problems. I think most people are the opposite though to be honest, could be wrong.

You of all people would know that parenting a child with severe disabilities for life is hardly the same sort of 'hardship' as having a child who will be all to briefly a teenager!!

it is all the arses out there that seem to add to the ignorance surround disability and the government with its lack of understanding with regards to people within our community who may have special needs. That is where my greatest stress comes from - ignorance, fear, discrimination, seeing my child as less than a person - that is where my stress comes.

From trying to raise my family in a society and to a larger extent a world that sees one of our members as less than worthy. That views her as a dis ability rather than a little girl with potential to be something and someone. People who pity us - who think my other children are somehow missing out because of dd1.

therein lies the stress and the constant b-s that gives me the shits.

you know what I find patronising? These people who stand there and say that they know they would not be able to cope with a seriously disabled child and how dare anyone suggest that they might be able to because people are entitled to make their own informed decisions. And these are people who haven't actually experienced having a disabled child or even a termination for a disability.

It is one thing discovering that you are carrying a child with a serious disability (and I will not limit that to ds because there are far, far worse things out there), to do the research, speak to the professionals and maybe even parents of children who have been through the same and make an informed decision on that basis.

But to just say that you couldn't cope based on what you think you know is quite another. You do not know you couldn't cope. And do people who are sure they couldn't cope with a disabled child go away and do research on disability and the effects of it and the issues involved (that is all disabilities) before they have children? I think not. And yet I have seen posts on this and other threads from people saying that they had always decided they would terminate because of serious disability. And that decision is based on what information exactly? No-one researches serious disability until they have to. And yet people still feel they couldn't cope, despite not actually knowing what it is they would have to "cope" with. That is ignorant.

gawds, if everyone aborted cos of hardship half of us wouldn't have teenagers!

ROLF at Riven

But it still IS stress isn't it eidsvold regardless of whose fault it is.

And again it varies from individual to individual.

I have to say my dad has never even noticed prejudice against his disability but he gets very depressed by the fact that he struggles to get out of bed and can't walk!