To be shocked 90% of Down's babies are aborted?

[Strictly]

I was jut reading this sorry, yes it's from the DM!

and then did a little Googling and it turns out 91% of people told their baby has DS will have an abortion...

I'm just astounded it's so high. I'm not making a judgment on the idea people might abort, but am very shocked that it seems almost universal to abort if told the baby has Down's.

I wonder what it is about that particular condition that 91% of people feel they could not live with? The rates for abortions of Cerebral Palsy babies for example is nowhere near as high. Is it just that Down's is easy to detect so the majority of people actually get the chance to decide?

people*

"People might feel they couldn't cope but they don't really know do they and some of those same people say they would have to cope if their DC was diagnosed with DS after birth. "

Well they would have to really. There aren't too many other options.

"I am not saying everyone is the same or everyone could cope, but you just don't know uhtil you've done it."

For some people that is unfortunately too much risk to take.

Yes there should be more social care....but there isn't so that is that.

sadly it is all going.
look at the changes that will happen to DLA.
the cuts to SS.
my dd is 15 I reckon by the time our caring government has finished there will be nothing left and she will loose all her independence.
that is what we should be fighting

devientenigma please don't "shut up" I think it is very important to have a balanced view.

sorry 2shoes you have drawn me back in. I realise what I say is not what the majority want to hear, but your last post RE cuts........I agree!!

lastresort, I wish I cold wave a magic wand.

Well if we had magic wands we wouldn't even be having this conversation as there would be no need.

All the people I know with Downs syndrome live either with their parents, or 'independently' but with lots of assistance from their parents. The parents I know of those with severe disabilites (not just Downs) often choose to care for their children into adulthood because they don't think others could do such a great job, or they've always done it and carry on, or just because they don't get or access the help out there. I do know one person who has just moved out after 45 years, to a home, but she is extremely aggressive and so needs very specialist care and it was only when the parents themselves became old that they started to let others help.

My friend who had a baby with Downs syndrome worries endlessly about the future. It didn't stop her having her child, but to say people shouldn't worry about it is strange. Downs syndrome is associated with a greatly increased risk of early onset dementia and having any type of IQ impairment means that you depend on others, in the future, when you are not there, to do their best and for the State to provide that help. Having a child who is going to remain vulnerable and require assistance (maybe not from you or the siblings, but from someone) is bound to be a worry even if it doesn't impact your decisions about testing and termination, I just don't see how you can not worry!

Devient, no-one has suggested you shut up and I certinly don't want you to, why would I? Of course, your experience is avery valid one (as I have already said) but I do think it is important to acknowledge that the majority of people with DS are not in your sons position and the majority of parents who's child has DS are not in your position, something you have even said yourself further back in the thread.

I'm not condemning anyone. I have said several times on this thread that I agree with people's right to choose. However, that doesn't mean I can't also be saddened by it.

Kaloki there are other options actually. I was given the option of leaving my DS at the hospital. Even in my initial shock (and he was a baby I never wanted from conception but I couldn't go through with a termination) I thought the idea ridiculous one, but people do do it.

Onetoomanycornettos yes it is a worry.
my dd will all ways need help, she might not have ds but she is severely disabled.
but I would rather have her even with the worry.
it is easy to just think of the negatives.
don't suppose anyone wants to know about positives,
to hear the good stuff.

So leaving your child at the hospital is an other 'option'? Are you serious?

there is one thing I have never done and that's told anyone, especially new or pregnant mothers how having a child with DS is for us. I sit watching all the polished positive stories and think I would love for people to see the flip side.
There's a woman on facebook, keep asking for my story for her book!! she will wait forever. When my SIL was pregnant I asked did she know what she was having and my other SIL who's DD has DS said should you not be asking is it ok!
I just feel so sorry for the woman who thinks life will be ok after listening to all the good stories, stories that you want to hear, then go down our road.
A year later I had a few questions for the hospital staff, so i took him in on his 1st birthday, when I saw the midwife who delivered him, she said, you kept him......I thought you bitch, what do you mean by that, of course I kept him, he's mine!!

'So it's ok to cast judgements on the lives of people with disabilities "they're so tragic/no quality of life/not worth living/it's not fair to siblings/will be a burden on their family" shall I go on? Yet it's not ok to have any opinion on people who terminate a pregnancy where the condition is not incompatible with life that isn't sympathetic and understanding of the fact that they have somehow averted a tragedy?'

WannaBe, you make a very good point here.

People do it, why is that more shocking than terminating a pregnancy because of DS?

Incidentally, DH is not the father of my living children. He adores DS and the decision not to test for Downs in this and past pregnancies has been a joint one.

if that's aimed at me, I have always said, it's the persons choice!!

devientenigma I am very sympathetic to your plight and understand that you don't fit in with the prevailing 'narrative'. There are no one-size-fits-all answers here and its wrong to assume all DS kids will end up like the lovely actor Tommy Jessop. You will not see the badly effected children, they are too ill to be out most of the time. I grew up living next door to a wonderful family whose 1st child was born with bad CP and I have no illusions about how it can be. Tony never went out when he was older as it was impossible to move him, I am talking about over 30 years ago. His poor Mum had to feign a suicide attempt to get any respite care, it was horrible.

I am now concerned about the impact our economic situation may have on the most vulnerable people in our society. It may go back to the state it was in 30 years ago which would be really bad for those parents with disabled children.

devientenigma, fabulous post! You tell it like it is! Respect.

"I am now concerned about the impact our economic situation may have on the most vulnerable people in our society. It may go back to the state it was in 30 years ago which would be really bad for those parents with disabled children."

Of course it bloody well will.

Sorry, I'm getting aggressive. Off to bed for me!

Pigtail, I will add that the economic down turn was nothing to do with me. I didn't vote for Prudence and I have not indulged in all the bubble inducing activity. I was merely stating a fact.

"I can see what you are saying, but people aren't saying 'I would terminate if the child had additional complications that were incompatible with life" they are saying they don't want a child with DS full stop, usually because they couldn't cope (may or may not be true, they'll never know will they?) or because they don't want to burden siblings (something there is no need to happen in this day and age)."

All true, but some on this thread are also projecting that viewpoint onto the parents of the 90% of babies with Downs Syndrome who are actually living in this situation and have made the decision to terminate, when we don't know anything about the complications/poor prognosis that may have gone hand in hand with that DS diagnosis.

Devient, my heart goes out to you, because you are living something very difficult, with a son who doesn't fit the 'sweet good-natured Downs syndrome child' stereotype (which is not surprising, given it is a stereotype). I think there are lots of positive news stories about Downs syndrome around these days, several journalists (is it Simon Barnes?) have children with Downs syndrome and I have seen many stories along the lines of 'I'm so lucky to have my child with Downs syndrome, he's taught me so much etc'. If you go on the Downs syndrome association website it is full of such positive stories, and I do find them inspiring. And, of course, these are true stories and I'm glad that they are out there, so that people realise that many people with Downs syndrome can live interesting and fulfilling lives, have relationships and so on.

But of course, in the desire to redress the balance, and to make people aware that Downs syndrome is not necessarily a tragedy, some difficult stories have been swept aside. My friend who recently had a Downs syndrome baby spends many hours a day just tending to his other health needs which are multiple and severe. And as I say, the other person I know with Downs syndrome is hyper-aggressive, like a toddler in a very large 45 year olds body. So, these are not rare cases, they are the reality of some peoples lives. And, having seen my friend struggle, it has made me think twice about whether I could cope, or should have the test, whereas in the past, when I encountered people with Downs syndrome as a child who were much more independent and really very happy in their lives.

One story doesn't cover all the eventualities, and that's the point: you never know what you are going to end up dealing with when you have a child, and that is as true of children with Downs syndrome as without.

"what do people tell the siblings? if you terminate to spare them the threat of caring for a disabled sibling, do you tell them (obviously when they are
old enough to understand) that you did it for them?" I was seven when my mum had a termination because she didn't want another disabled child. I don't remember exactly what we were told, but I do know that she told us she was pregnant, but that she didn't want the baby. And I know I was party to the discussions that occurred along the lines that although doctors had told her that it was unlikely another baby would be disabled, as they didn't know what the reasons were for my disability, how could she be sure it wouldn't happen again, and given that the cause was thought to be in the brain, what if next time the damage to the brain caused more severe disabilities. I remember going to school and telling my best friend that my mummy was having a baby, but that she didn't want it so she was going to the hospital and they were going to take it out of her tummy. Obviously at the time the implications weren't that clear, but as I grew up they certainly became clear ? had she known, then presumably I would have been terminated. Had I not had a disability, then presumably that baby would not have been terminated.

I guess I deviated slightly from your point 2shoes in that my mum didn't ave the termination for me but because of me iyswim but I guess the point remains the same in a way?

Fwiw I no longer carry that guilt ? I am not responsible for those decisions. And perhaps in retrospect my mum would have done things differently, who knows.

devient my exprience is not the same as yours but I do think there are some parallels.

The organisations that work with children with cancer tend to focus very much on the positive stories. They do talk about the battle to get well but the children the feature are always described as doing well etc. The stats are always very positive (unless it is a specific fundraising feature).

I know why they do this. There is no point in being negative when your child has a dx. It gets you nowhere and is a waste of your much needed energy.

But sometimes I feel like screaming 'what about the rest of us!'. Its not a logical feeling and I have no resentment (far, far from it) for those families who have a good outcome. It doesnt stop me feeling that the whole picture is not being represented though.

But no one wants to talk about it. This can mean that when a child dies the family has no real place in a 'community' that has been a part of their lives for years.

I also had to make the decision to stop treatment on my DD. I have been called a murder because of this. I didnt give a toss TBH because the comment was made by someone who had NO knowledge of our situation or anything near it.

I am not sure if this post makes sense in relation to this thread. It does to me but it may not translate well from my head to the page.

I have strong feelings about how disability is veiwed in our world but I do not judge indiviuals for making choices I know nothing about.

But if I was asked 'is it right to terminate a preganancy because a baby may have Downs?' I would have to say no.

Once you start adding extra information and taking into account additional circumstances the picture is not so clear.