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 didn't think you were talking about my son. It was a reference to the surprising number of people in RL who seem to think I want to know that they would terminate a hypothetical child like him (or indeed have terminated a child like him). I don't care what they would do or what they have done, I just don't want to know about it.

People can do what they want - I just have absolutely no wish to know.

The bit I think you don't 'get' is that the practical difficulties of caring for a child with significant SN (and you don't get many more practical difficulties than we have with my son tbh) doesn't make life dreadful.

I learned very early on to be very very careful about being positive about my son to professionals - especially ones who have no hands on experience - as it earns you a 'mother in denial' label. In the early days I made the mistake of countering the negative assessment with positive information- which I thought they would want to hear. Until word got back to me that someone I had never met and who had never met my son was merrily telling his soon to be school I was 'well known for being in denial'. It was laughable considering I had to push and shove for over a year to get an assessment and get him diagnosed.

I now know that the majority of people think him less important than his brothers, and the majority of people think that for us he is less important than his brothers. Yes no doubt the majority of people think that he is a burden to us and his siblings. However, like Pagwatchs very clever ds1 we use ds1 as our bullshitometer and those sorts of people don't stay in our life long. The people we are surrounded by recognise the practical difficulties that his disability can cause and do things thatt helps practically. They don't patronise us or him by ever viewing him as a burden. And they respect him for what he is- a human being whose life has every bit as much value as the rest of ours. That's what I don't think you are 'getting'.

"You can't wait until you have experienced something before deciding whether its right for you all the time"

5Candles not all SN needs parents have that option, and those of us that haven't,(our children having non testable conditions) are still saying that even if we had had the opportunity,now that we have our children,we love them BECAUSE they are our children,even if they do not conform to the societal "Norms" (wtf is Normal anyhow?) We love them because we see past the labels that have been placed upon them by society,they are OUR children.We are not saying it is always easy,we are not saying life is a bed of roses,we are saying the challenges are DIFFERENT (I have an NT and SN child) Of course I believe in an individuals right to choose whether or not to continue with a pregnancy,BUT a big part of me finds it incredibly sad that an individual with ds for instance is seen in a negative way.I can understand an abortion of a child that has a non compatible with life genetic syndrome,for instance,but I do find abortion in terms of a condition such as DS,or cleft palate is quite abhorrent.

People can be an expert on their own family, but all children are unique as are family set ups and relationships.

Those who enjoy a happy family life regardless of whether or not their child has SN or a disability, cannot possibly say that another's experience would be the same. We are all different.

'But fivecandles, no-one said that parenting a child with sn is a constant joy etc.'

Actually there is quite a lot of this going on. But more than that there's a dismissal or trivialing of the hardships which are involved with some disabilities.

I actually think it's ok for parents to say that there are some disabilities or condititons (particularly terminal ones and ones which involve the child suffering) that they just wouldn't want/ be able to cope if they could choose not to.

But more important that all of this for me is the idea on from some posters that parents aren't capable of making up their own minds (instead they act out of 'fear' or 'issues' for example). I think this is wrong and takes us back centuries in terms of respecting women's right to choose what happens to their bodies and families.

'Of course it's hard. but I imagine parenting a drug addict or a juvanile delinquant is just as hard.'

It's just not possible to make comparisons and judgements about what is harder or 'just as hard'. It has to be up to individual parents to decide what they can cope with. Being a drug addict is not a physical condition that you are born with. It's just not a relevant argumetn. This thread is about conditiotns you CAN test and why you might want to do that.

'I don't think parents would be so quick to terminate as if the results came back that the baby had downs.'

I find this offensive. Maybe not intentionally and maybe there are a few exceptional parents who are 'quick to terminate' but this trivialises what for most is an incredibly traumatic and agonising decision.

With respect, jimjams, if you don't wish to know people's opinions in response to the OP why are you on this thread?

'The bit I think you don't 'get' is that the practical difficulties of caring for a child with significant SN (and you don't get many more practical difficulties than we have with my son tbh) doesn't make life dreadful.'

I don't 'get' them in so far as I've never experienced them as a parent, you're right. But if you read my posts, I think you'll find that I'm the one who is saying that there should be more awareness and support for precisely that - 'the practical difficulties of caring for a child with signifiacnt SN'. In fact, that has been one of the main strands of my argument - that these are often unacknowledged or trivialised.

Oh sorry just read the end of your sentence 'doesn't make life dreadful'. Well, maybe not. Not for you. Not for many. But you have to allow people to make up their own minds about whether they think that it would for them. ANd if they think it would then that decision has to be respected. And again, of course, it depends on the condition. I have some conditions in mind esp. those where children's lives are short and painful where I PERSONALLY think my life would be dreadful even acknowledging the joy and love that a child with such a condition might bring.

With respect, jimjams, if you don't wish to know people's opinions in response to the OP why are you on this thread?

'The bit I think you don't 'get' is that the practical difficulties of caring for a child with significant SN (and you don't get many more practical difficulties than we have with my son tbh) doesn't make life dreadful.'

I don't 'get' them in so far as I've never experienced them as a parent, you're right. But if you read my posts, I think you'll find that I'm the one who is saying that there should be more awareness and support for precisely that - 'the practical difficulties of caring for a child with signifiacnt SN'. In fact, that has been one of the main strands of my argument - that these are often unacknowledged or trivialised.

Oh sorry just read the end of your sentence 'doesn't make life dreadful'. Well, maybe not. Not for you. Not for many. But you have to allow people to make up their own minds about whether they think that it would for them. ANd if they think it would then that decision has to be respected. And again, of course, it depends on the condition. I have some conditions in mind esp. those where children's lives are short and painful where I PERSONALLY think my life would be dreadful even acknowledging the joy and love that a child with such a condition might bring.

'And they respect him for what he is- a human being whose life has every bit as much value as the rest of ours. That's what I don't think you are 'getting'. '

No, no I DO get that honestly I do. I absolutely get that parents love their kids and they bring them enormous joy and that children with disabilities are no less valuable. I passionately agree with you.

But none of that alters the fact that some parents will choose to terminate their pregnancies before the foetus becomes a child that they fall in love with IYSWIM.

I really get how having given birth to a child with disabilities one would love that child as much as any other child .

I find this thread strange, for some reason fivecandles has become like a dog with a bone.
your attitudes and comments are strange.
my dd goes to a sn school. it is a school with an excellent reputation. full of caring teachers and staff.
none of who would dream of using the young people or parents they support and teach as fodder for an argument on a website.
you talk about what you have been told and what you have heard and your dads ms.
none of theses things give you a hint of what it is like to have a disabled child yourself
of course there are parents who can't cope. but that happens in the nt world as well. some people just don't cope.
you have been picking apart everything riven says, which is offensive and if someone disagrees with you, you talk over them or bleat on about the people who have talked to you.
not once imo have you posted anything other than hearsay.
where as there have been some very interesting posts on both sides of the fence who give valid reasons for their opinions.

sadly every time a thread like this is started some one with limited knowlege sets themself up as the "person who knows most" and shouts everyone else down.

I absolutely respect that Fanjolina. Please don't for a second think that I'm saying that all disabled children should be terminated or anything else. I am actually very, very positive about disability.

And I actually find the whole idea of termination for whatever reason incredibly upsetting and uncomfortable. Gut wrenchingly so.

But I think it is crucial to respect individuals' choices either way and to respect the principle of choice itself.

And how well informed are people who are having invasive tests?

'none of who would dream of using the young people or parents they support and teach as fodder for an argument on a website.'

I don't think that I'm doing that any more than you are or anyone else is. I have mentioned my experiences and my opinions as you have mentioned yours. Why is that not allowed?

'you talk about what you have been told and what you have heard and your dads ms.
none of theses things give you a hint of what it is like to have a disabled child yourself'

But I've never pretended to know what it is like. That doesn't mean that I am not entitled to my own choices about my family and to get involved in a general discussion in response the the original OP and that my opinions are not legitimate.

'of course there are parents who can't cope. but that happens in the nt world as well. some people just don't cope.'

Wow. Thanks for that insight.

As I've said I'm discussing issues. I'm not really interested in personal and very vague attacks as you obviously are. If you don't want to debate the issues go somewhere else.

I agree with Dominic Lawson: obstetricians know nothing about DS.
Very lovely girl with DS on that thread.

link. Not thread.

Well personally I think everyone on this thread should watch that link.

Well personally I think everyone on this thread should watch that link.

Some of you seem adamant that there is only one kind of ignorance here: that of would-be-parents of what life with and for a disabled child would be like, leading them to choose tests and terminations that are wrong wrong wrong in your eyes. What about your ignorance of what those would-be-parents are like? By that I mean what they believe about themselves, their personalities, mental and physical resources, family history, extended family situation, finances, marriages (solid v. rocky) - the works. You don't know anything about these things - so how can you look at the people having tests and terminations and say all testing is just due to ignorance of how much parents would love a disabled child and cope, actually, in the end? How, without knowing these people, can you be so sure that they are seeking certainty of a perfectly healthy and fully able child (which obviously something like DS testing cannot give you)? Where is the source of your special knowledge, that you don't believe they're just trying to rule out, or know about, one thing, while accepting perfectly happily that there are still chances of many other things happening (including autism and drug addiction, to pick two of the things mentioned above)?

People who believe that abortion is not wrong may choose to have abortions for a whole variety of reasons and some of them will be based on good information, some on bad. People will have terminations just because the baby will be a third child when they feel they can only cope with two. Yet many people cope happily with three children and their third children bring them great joy. The people terminating to avoid a third child cannot know what having a third child would be like, really, and they might well cope much better than they realise, find it all joyous, and it's fine to look on that situation and say "that's sad, I'm sure they'd be happy really with a third child". But we may still be wrong about that, and in any case we are not the ones making the decision - even when we think we know all about someone we still can't know every factor they need to consider. Surely it's the same with any other special feature of a potential child - whether it's their mere existence as another person in the family or extra needs or constraints on the family that will arise from a disability. If you're not the person who's pregnant, you can't know everything that's gone into their decision, and you can't judge it to be right or wrong. It's got nothing to do with you and it implies nothing about what you should have done, or how valuable your own third child, or child with SN is.

I worry that threads about this issue aren't about the topic as such - but really focused on validation for the OP (not necessarily this OP, but anyone who disagrees with antenatal testing or termination for disability). Which is fair enough.

Yes, I had tests during pregnancy. Yes, I would have terminated a pregnancy had the result been a bad one. It wasn't for DS but another trisomy (which I know other MNers think isn't a reason to end a pregnancy). In our case the result was fine and no, we couldn't rule out many, many other conditions which could affect our daughters' quality of life. Would I opt for them if they were technically possible? Probably not. But I felt what I was excluding was serious enough to merit what I did (with a very very heavy heart).

Personally I wouldn't opt for an abortion for "social" (ie non-health) reasons - but I would never condemn another woman for doing so. Nor would I make it impossible for her to choose that difficult option.

Please don't take my post as a slur on the lives of people with disabilities. It's simply my way and doesn't mean it's better or worse than someone else's - though some may interpret it as such.

actually five candles - something you said about doctors having to be factual and informative or something along those lines - ( i skimmed read as I am off to take dd1 so SALT and then school)

Actually I have heard some of the most ridiculously ignorant comments for doctors - what we expect of them and what they deliver are often two very different things.

Comments such as:

'Oh she can talk' about dd1 from an ent consultant.

'children with ds do not have a long life.' Perhaps a long time ago when they were told very incorrectly that cardiac surgery could not save their child and so were refused cardiac surgery.

'children with ds cannot learn' absolute tosh.

'she will never be independent' - bollocks. They do not know dd1!!

I have also had an obstetrician ask me how I knew my child ( who as in the room at the time) had down syndrome. I was gobsmacked - this woman who is in the business of delivering babies was stunned to learn that the child sitting in front of her had ds. Now a sonographer could see it BUT an obstetrician not.

"Being a drug addict is not a physical condition that you are born with.". I disagree. There's a lot of research that suggests that addiction is something people are born with, ie that certain people are more prone to become addicts than others, be that to drugs, gambling, alcohol etc.

And no addiction may not be something that is there from birth, but neither is autism. In fact many parents with children with ASD comment on how easy they were as babies - I even know someone who thought her ds was very advanced as he could speak almost in sentences by 18 months, but then his speach regressed and by the time he was two he was non verbal, he is 12 now and is still non verbal. And while autism is not something that can be tested for prenatally I bet there are people who would terminate an autistic baby if such a test were available. Not sure they would terminate a drug addict one though.

And I'm not trivialising it at all. Drug addiction is a terrible thing. I am much more scared that my ds will discover drugs as a teen than I am that he might fall victim to a terrible tradgedy and become severely disabled as a result.

"Being a drug addict is not a physical condition that you are born with.". I disagree. There's a lot of research that suggests that addiction is something people are born with, ie that certain people are more prone to become addicts than others, be that to drugs, gambling, alcohol etc.

And no addiction may not be something that is there from birth, but neither is autism. In fact many parents with children with ASD comment on how easy they were as babies - I even know someone who thought her ds was very advanced as he could speak almost in sentences by 18 months, but then his speach regressed and by the time he was two he was non verbal, he is 12 now and is still non verbal. And while autism is not something that can be tested for prenatally I bet there are people who would terminate an autistic baby if such a test were available. Not sure they would terminate a drug addict one though.

And I'm not trivialising it at all. Drug addiction is a terrible thing. I am much more scared that my ds will discover drugs as a teen than I am that he might fall victim to a terrible tradgedy and become severely disabled as a result.

This really isn't about whether you love a child who has been born, surely? Of course most normal people will passionately love the child that is born whatever their problems. But equally, people can can know about the love, but still worry about other things. I spotted a post the other day by someone who'd had a child as a lone parent after splitting up with her partner. She said, very honestly, I thought, that she loved her child to bits, but it was very, very hard and if she had known what it was going to be like, she would have had a termination. It just is usually harder having a child with a disability. The rate of poverty and unemployment in parents of a child with a disability is so high, so is the divorce rate. Yes, it's not inevitable that having a disabled child will lead to those things - look at the Camerons! But the worry can be constant, and there are always new hurdles, be it seeing your child excluded by other kids, fighting for an education, sometimes the sheer physical grind. Of course there is also overwhelming love, and I think that's what people are saying the person looking at the hard work cannot see, but I'd guess people terminating think that they would rather have a child to love without all the other difficulties (and poverty, lack of childcare, unemployment etc are big difficulties). I'm sure some people think that is wicked and weak, but that's why people terminate. The person I know who had a sick/disabled child and had a termination for the same condition could not imagine coping with the worsening physical demands of another child, could not imagine coping with the emotional trauma again, and could not imagine being able to give enough to her existing disabled child if she had another. She knew but she still terminated.
I agree by the way that if there was much more and more publicised support for children and even more importantly adults with disabilities, and opportunities for them in adulthood such as work, then maybe that might make a difference to people when facing decisions about termination. Nobody would balk at having a cute baby or adorable child with LD but people are scared of either having their adult child living with them forever, or having to find what they suspect is substandard care for them in adulthood. That is a scary prospect.

I still think people should watch the link above. It's from tonight's channel 4 news, and I think is of interest whether or not you would opt for testing.

the link again

GREAT link JimJams, thanks so much for that.

what a beautiful child at the begining.
the whole thing just made me wish people just accepted children with ds.

eidsvold, I agree those are v old fashioned and shocking attitudes. I know an ENT consultant in Manchester who runs a monthly clinic purely for children with DS. He regrets the fact that in the past children were dismissed as not able to learn simply because of their hearing problems exacerbated by things like glue ear.