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?

Am amazed that you are persisting with comparing being female with being disabled riven.

I find that truly shocking.

I can only come at this as a parent with a dc with SN that could not have been predicted ante-natally.

I think having a sn child and trying to explain how it is to somebody with an nt child/ primagravida is like a mother trying to explain to a first time pregnant woman the realities of having a baby.You just cannot "Get" it unless you are living it IYKWIM (I am not aiming this in any way disrespectfully at 5candles or 12legs)

I sometimes wonder if I had known about dds delays (she has a brain malformation) would I have considered the option of termination if I had known before I met dd IYKWIM and I really don't know how the pre dd me would have answered.That is true and from the heart statement and probably makes me a really bad person.It was more for the fact if I would be strong enough to cope with it all and what would happen to her when I die.I guess I was fairly ignorant about the world of disabilty,and thats what is the problem societally,really.

Now she is here,and I would not swap my funny little girl for anything.She is my adorable dd.The best things that have been posted in this thread were Gracifers lovely post,and all the posts that say it doesn't matter that your child is disabled,you love them just the same as you would another child and delight in the progress they make.Expat is spot on with her posts too.

Anyway am rambling on pretty inanely.Will shut up now.

Habbibu, I realise that, but Cote hasn't apologised for her view, just offending people by expressing it.

It is not a personal dig, I am just horrified that this view is still prevelant.

hi ladies, I'm crashing here, but get over here www.mumsnet.com/Talk/1367/607646

A friend of my friend was pregnant at the same time as me and gave birth before Christmas, I had my DD in April. The baby was born at 22 weeks. She had the steriod injection for the lungs the day before and their little girl was on a ventilator for only a couple of hours. She is now 6yo, still a little bit smaller than her classmates but completely healthy.

I now believe that the legal limit for termination should be reduced. As the medical innovations develop, then so should the legal limitations.

"I find the idea that a test that says that 'this child is autistic' could prepare you for anything at all laughable. The range of issues you could experience is huge and changes all the time."

I think Jimjams and I will have to agree to disagree. I respect her view on this. But for many people knowing does help in preparing oneself and educating oneself on SOME of the things you MIGHT encounter.

My mum benefited from meeting other diabetic mums who told her some of the things that their children experienced. I too have , I think, helped Spidermama, when her ds was diagnosed diabetic.

'there was a huge undercurrent of feeling that ALL disabled children blight their failies lives in some way.'

I've not noticed this and this is certainly not how I feel.

'and then we were told that, of course, given that we have disabled children, and do not think they are a burden, then no-one would say otherwise to our faces.'

No, you misunderstood.

What I'm saying is that if I was pregnant with a disabled child and considering a termination I probably wouldn't really want to discuss it with anyone TBH but I certainly wouldn't want to discuss it with someone who used the word 'killing' instead of termination and believed her own disabled child to be a gift etc etc. Can you see why?

"There are as many individual ways of reacting to a child's needs as there are different children and different needs" - this sentence could easily have been written about an NT child, so why is it so different to want to talk about people's reactions and thoughts on disabilities?''

I just don't think you can generalise because it's so incredibly individual and personal.

The choice of a single parent who has been told her child will have a life expectancy of 5 years during which time they will be in constant pain is completely different from the choice of a couple with a child with a cleft palate.

Dangerous to generalise, dangerous to compare.

I have a 6 year old girl with autism and a NT girl who's 4. I do not consider dd1 to be in any way a burden, or more work than dd2. They are two very different children with different needs, but I run around after them both equally!

Actually, I would like to make the point here that having a child with SN is not difficult in itself, but getting the education and services the child requires is and can be very stressful.

I believe that all children with SN have great potential but not enough of them fulfill it, because they are written off by a lot of people who have low expectations of them - people who don't understand that they are capable of a lot but require a different approach than NT children. I'm afraid I do also think that there is a prevailing view ingrained in our society that disabled people are worth less than NT people, and while that remains we are always going to have a battle.

My dd was diagnosed with severe autism aged 3.2. Her diagnostic report really gives a bleak prognosis for her future. But she will be 7 this year and has achieved so much more than I ever thought possible, having had a good educational program which meets her needs.

One thing I do know is that I am a better person than I would be today if I had not had her. My view of everything is different and I see no value in harboring prejudices. This makes me examine my thinking about everything. I'm sure I could say the same for others in my family.

'I think its a statement of fact. I've heard so many people say 'I couldn't have a disabled child, it will wreck my life, be a burden, destroy my other children, we can never go on holiday' etc etc'

riven, some people may say this. I think any woman who ACTUALLY considers terminating her pregnancy because she is told that it will have disabilities almost always AGONISES over that choice.

'I've heard them say that is why they would terminate And given thats out of sheer ignorance'

But you're actually not talking about any specific cases here. These are all your assumptions.

And you making assumptions about why women opt for terminations is just as wrong as anyone else making assumptions about why women don't.

'I have strong opinions about the rights of disabled babies. '

Which are respected. But other people may have different opinions about their own circumstances. That's allowed you know.

Lou, Why should anyone have to apologise for their view? It's their view. Judging by the termination rates in this country she is not alone.

fivecandles - what do you mean 'dangerous'? I don't understand what points you are trying to make. I'm sorry but when you say that it rather sounds as if you are trying to shut down debate. Sorry if I misunderstood...

People HAVE discussed terminations etc with me privately in a very honest and intelligent way when of course they wouldn't feel able to talk about their feelings generally in public and certainly not with people who are as judgemental as some on this thread.

Perhaps if parents felt more able to speak openly without feeling judged and ashamed about their feelings then attitudes towards disability and parenting would change for everyone's benefit.

In my first pregnancy when telling me about the triple test the midwife told me to think very carefully about whether to have it or not because she said that it sets you on a road of testing that is hard to get off from.

It was really good advice and my dh and I decided not to have the test at all. But I have noticed in this pg that the midwife did not say anything about the triple test just made it sound like something everyone has. I then had to make a point of saying I didn't want it.

Basically, I think the midwives should clearly explain to people what the test results do/do not show and warn them about the consequences in the form of more invasive testing.

I'm sure lots of people sleepwalk into the testing. My sil was saying the other day that she deeply regrets having an amnio with her son (he was fine) but she knew nothing about the risks at the time and wasn't told.

fivecandles - can I be nosy and ask what your work background is - are you in education or healthcare? feel free to tell me to bog off, just curious as you have a lot of experience of working with families with kids with SN.

Not shutting down debate at all.

I mean precisely what I said that it's dangerous to make generalisations.

I.e. just because one parent considers her disabled child and herself and her family to be happy etc that this is going to be everyone's experience.

Or to suggest that all women who choose to terminate do so out of ignorance or that a single parent choosing to terminate her child who will suffer hugely and never be able to leave the hospital is the same as the couple with a child with a cleft lip.

Individual parents and children; individual choices.

when my uncle was born in 1958 with severe spina bifida my grandparents were told he'd die within hours. a nun present a the birth insisted doctors insert a shunt and they reluctantly did although they didn't believe it would do anything for him. when he was still alive a few days later they were told he'll be dead at 6 months/2 years/5 years/10 years.....

he was 50 this year.

he had parents who treated him just like their healthy son in so much as that ws possible. he went to school for as long as possible, he went on hoildays at least once every year of his life, he moved to a care home in his 30's as my grandparents were getting older. he has a job and friends and has been happy his whole life. ok so he's never gotton above the leval of a 13 year old mentally and he's never walked but he's had a good life.

i asked my father years ago 'knowing what you know about what life is really like for him, what life was like for Oma caring for him, what life was like for you with a disabled brother, if you'd found out your child had SB before the birth, would you have had that child?' and his answer was 'yes, my brothers life is differant but it's not a bad life'

the thought of saying 'this child isn't good enough/perfect enough/will cause too much hassle/won't fit in' is baffling to me. when you choose to have a child you chose to accept all the possible difficulties, traumas, heartache and tears that child might bring you. any child who comes up clear on the antenatal tests still has a chance of having severe disabilities. if you can't deal with one type of disability then surely you can't deal with any at all and shouldn't be running the risk of having a child in the first place

Teacher so yes lots of experience with children with sn.

DP is a teacher of kids with severe emotional and behavioural difficulties.

PIL foster children with all sorts of needs.

Father has MS.

Not sure how much any of this has or hasn't influenced by views here though

how odd that 5candles. is putting down anyones opion that is not the same as hers, and seems to find so many things offensive.
I find it offensive when people call a disabled child a burden and talk of them wrecking their siblings lives.

I live in the sn world. because of this I know a lot of families with disabled children. mos are sevely disabled.
yet I have never heard one parent/partner/sibling refer to the child with any thing other than love.
cnatting to parents who are in the same boat, brings the truth out, we talk in without shame, we talk about the highs and lows, yet never of burdens/terminations/killing children/ or wrecked lives.
why because these are our children that is it, they are just children.
(awaits 5candles to say my opion doesn't count)

Oblomov - The range of abilities and disabilities that come under the umbrella of autism is vast. Add in to the mix that no two children with ASD are the same and you are left with very little that you can actually prepare for.

I thought I knew what to expect with ds2 (ASD) as I already had one child with an ASD dx. Instead I discovered that they are so different to each other that in many respects they are virtually opposites. I was all prepared for a child who found physical activities and fine motor skills difficult, who felt little or no pain, who liked to hide in dark corners. Instead I had a child who was like a whirlwind, incapable of staying still for a moment, who was spookily good at anything physical, and who hated the dark with a passion.

In short, nothing could have prepared me for ds2's own particular brand of autism.

Thanks for the reply fivecandles. I guess your PILs involvement in fostering means you see a lot of the cases where parents are struggling tocope (assuming you mean long-term fostering, not respite)

2shoes, I am not putting down anyone's opinion. I have certainly not called disabled children burdens. Can I suggest you perhaps read my posts before responding to them?

2shoes, I haven't read any posts where five has questioned anyone's right to an opinion just her right to have her own.

Noone has called disabled children burdens just saying that some parents do feel their children with SN are burdens.
Likewise we wouldn't kill our elderly relatives burdens but there's enough in 24 hour care with barely a visit that may tell a different story.