Ignorant quetion, and not sure how to put this tactfully, but why do people not want to have a baby with DS?

[LesAnimaux]

I don't want to offend, or be flamed, but I am curious.

I've seen several threads where posters have terminated a pregnancy when they have found out their baby has Down Syndrome, and then gone on to ttc a "normal" baby.

Now, I don't personally know any one with DS or any parents of children with DS, so I genuinely don't know the difficulties they face. Is life with downs syndrome really so bad? Or is it the thought of a child growing into an adult with SN and having no one to care for them when the parents are no longer capable?

Out of all the things I worried about when pregnant, downs syndrome wasn't one of them.

df she's one of these "we don't have secrets in our family" types which in theory is great but in practice means that nothing was beyond discussion including telling your seven-year-old that you're pregnant and going to have a termination and why.

Tbh I don't really think I grasped the reality of the reasoning until I was older but I certainly knew what was happening because I distinctly remember telling a friend at school that "my mummy is having a baby except she doesn't want it so she's going to the hospital and they're going to take it away."

I suppose different people have different levels of what children should and shouldn't be told. But I know that looking at my eight yo ds now I can't imagine the reasoning behind telling a child that young something they clearly couldn't comprehend in its entirety.

sungirltan what an awful post

Why "awful"?

yes why? no skin off my nose if you think i'm wrong - own your own opinion but explain why?

I didnt have tests for DS or anything else in my last two pgs (in my 40s) because I knew there were far worse things in life than having a disabled child.

But that was mine and OH's personal choice.

I am puzzled at the targeting of Downs Syndrome. It seems to be almost an obession by the medical establishment.

I work with lots of babies with Downs. Most were dx after birth to younger parents. They are all beautiful and a joy to work with but they are all very different and have different problems.

Its not all smiles and cuddles.

Even though I saw babies abandoned because they were disabled when DD1 was in an American Neonatal Intensive Care comparable to Gt. Ormond St., I still honestly hadn't a clue what to do when waiting for DD3's amnio results after a very poor indicator from the blood test. I closed the curtains of my house on an army patch with all the other wives muttering about what might be wrong and I hoovered the carpets into oblivion for three weeks waiting for results, unable to see how I could terminate but not knowing how I could land the responsibility of a disabled child with my two DD's after I'd gone. I think instintively I knew I couldn't terminate, but the feeling was desperate, so many conflicting emotions. I really don't think it's possible to imagine the difficulty until you're in that position yourself. I hugely admire a mother I know, staunch Catholic, who never had scans on the basis that she would never have terminated whatever the outcome. Those weeks were desperate and when I got the definitive results after what seemed a lifetime (no DS), I still hadn't come to a decision, the emotional was still locked in battle with reason and I was just so glad to have the decision taken out of my hands.

Honestly I don't know why people do. DH and I plan on adopting a little one with DS at some point through Reece's Rainbow

My little cousin (he's 7 now) was my aunt's sixth child. She didn't have the tests and had previously had five healthy children, so it was a bit of a surprise when our Ben was born with DS, diabetes, something called Grey platelet syndrome...but he's ours. Our boy, and at the end of the day they just got on with it. He's a joy, and very healthy now.

It is hard to think of your children having to care for a sibling, but who says that's not going to happen anyway? My brother could be in a horrific accident and require care for the rest of his life, and I'd do it in a second. It's what family does, IMO.

So frankly, I don't understand it. But I'm also shocked at people who abort a twin because they only want one, or abort because of the wrong gender. You can't order your children off a menu FFS.

sungirltan Mon 11-Apr-11 20:27:19 that was the post I was talking about, I read it and thought it was a negative attitude by someone who should have cared.

Cheerful I think it's the forewarning of a disability which creates as many problems for some people as it solves for others.

If your brother was disabled in an accident, that's different because you have no opportunity to decide on an outcome different from one that fortune presents you with.

My cousin was DS and adored and cherished for 49 years but it was the knowing that my DD3 was at high risk of being DS and that this would inflict a burden on others whose responsibility it shouldn't be and that the whole situation was avoidable, though only in the most ghastly way - that was the problem.

For some people more religious than myself, it might be straightforward. I struggled.

Right...I decided not to do the tests with DS because it wouldn't have made a difference. Next time I will get them, because I'll want to have early intervention services lined up as soon as possible! :)

I think it's unfair to assume it's all about "wanting a perfect family", I do think many people have reasons going far deeper than that. But I do know, because they have said it to me, that some people just feel it's "not in the plan." Nothing about children, in my experience, is ever in the plan, so I sometimes wonder how they'll cope even with NT children.

I'd want to, I mean. If I were to have a child with DS.

shoesy - you have read it but you are choosing not to understand. it was about someone who cared deeply.

i always feel hesitant about posting my own anecdotes on this kind of thread because they always get ripped apart and discounted (i mean everyones not just mine personally). everyone's own experience and conclusions are equally valid.

i could post post reams 'proving' my mother is a caring person but that wouldn't make my points any more or less valid than the next person.

In general, in life, I think many people surprise themselves by how much they can cope with. I know it sounds flippant in the context of this convo, but as an example, I never thought I'd be able to cope with labour and birth (I turned out to be a veritable birthing Amazon ).

It's impossible to imagine what life will be like with a child with SN, though talking to parents whose children have the disabilities which your unborn child has is a good start. I'd also hope that that would encourage a parent-to-be to see themselves as someone who could bring up a child with SN.

'Perfect' in inverted commas, sungirl. Most people don't assume their child will have a disability/ deformity/ any other feature that makes them appear less than 'perfect'. But as I said earlier, this is nonsense because perfection is a fantasy.

I also agree that it's odd that Down's is singled out like this. Though the quad tests do also check for Edward's and Patau's syndromes, but unlike Down's these are generally life-threatening and give a child little more than an agonising couple of days of existence . So they're in a different category, IMO.

Though I think ultrasound screening shows up a lot of other birth defects which wouldn't be discussed if they weren't present...So perhaps there's not quite so much anti-Down's bias as we thought.

Because I believe it is morally wrong to bring a child into the world that doesn't have the best possible chance of being able to cope with what the world will throw at them.
Also I'm a selfish, impatient, intellectual snob who no ds child deserves as a mother

speedy - yes to 'perfect' NT is a better term i agree.

i dont think there is any 'anti ds' in particular - surely its only singled out because you can test for it. you can also test for SB too but is that a different discussion because its harder to argue how cute and cuddly and permanently happy SB children are?

startail - 'Because I believe it is morally wrong to bring a child into the world that doesn't have the best possible chance of being able to cope with what the world will throw at them. ' yes exactly, this is how i feel too

So where does it end, then? What if they can identify the genes that cause obesity, gayness, crippling shyness, dyslexia, a complete lack of ambition for heaven's sake? All of those things make a person not "have the best possible chance of being able to cope with what the world will throw at them."

I thought we'd all agreed eugenics had fallen out of favor...

can make a person, I should have said.

Quite, CheerfulYank.

Startail, children frequently try our patience. Fact. So to have a happy family life, you're going to have to tackle at least one trait on that list! . Possibly all of them - what if your child became an Elton John when you'd been gunning for a Mozart? I jest, but there is truth in my teasing.

cheerfulyank - well right now it ends at testing for ds/sb and those other two mentioned up thread (i dont have a correct list). theres been testing for these conditions for some years now and it hasn't snowballed

I hate these threads.

Lets get rid of 'them' at birth'. FFS

What on earth would people do if their child was in a RTA and developed brain damage? Or got meningitis and subsequently acquired a disability?

Yes, right now it ends at testing for Down Syndrome...

yes beaker, its a well know fact that all parents who considered terminating fall apart at the slightest damage of their dc. put like that theres no point in using a pelican crossing because the car might not stop anyway....