pagwatch thank you for your post - it made very interesting reading.
and it does chime with my experience, that when we were first told the diagnosis for our son (he had hypoplastic left heart syndrome, where the left ventricle does not develop properly) we were both terrified. And all we could contemplate initially was the fear of having a child who needed so much care, so many trips to hospital, and who might die at any moment from something as minor as an infection or a blood clot.
But then we did our research into what it actually meant, and talked to people living with it. And what swung it for us in the end wasn't about whether we were up to being parents to this child (although we were still worried about that) - it was whether we had the right to put our child and our family through the pain and suffering of the amount of serious surgeries (three open heart surgeries minimum, one within days of birth) that this condition required, with very uncertain outcomes. Our fears about whether we would be up to the job receded, the more information we acquired.
Unfortunately, the more information we acquired, the more we became convinced that we couldn't do it to our child, or to our existing DS.
What might seem like very minor things came into it, such as the fact that they don't do these heart surgeries in the city where we live, so within hours of giving birth, I would have had to go to London with the baby, and stay there for six weeks minimum expressing and feeding for the baby, who would have at least one open heart surgery almost immediately and then be in NICU.
This would have caused so much pain not only to the baby, who could easily have died in that first surgery, but to our family - to our DS whose Mummy would suddenly have vanished to London; to DP who runs his own business, but would suddenly have to do all the childcare for DS for six weeks, while trying to keep the business afloat so that we could support our two children.
I'm sure we could have done it, as you say, it's not about being worthy but about doing what has to be done. But the outcomes for this condition remain very uncertain, with survival rates very difficult to gauge beyond the teenage years, and we didn't feel it added up. Another factor, for us, was that babies with this condition will certainly die within days of birth without massive medical intervention. There are no survival possibilities without open heart surgery - so it wasn't about terminating a viable baby with problems, iyswim, but about deciding whether to intervene on such a massive scale.
Sorry, have gone on a bit there, but just wanted to get across that I agree - more information really helps to allay people's fears. And until you're faced with it, as you say, you just don't know how you're going to feel or react or what factors are going to come into it. I always thought I would have no problem with termination for disability. Having gone through the agony of deciding whether to terminate our second son, I'm not so sure any more.
But I would defend to the death people's right to make their own choices, and I think we have to trust people to make those choices in an informed way, while lobbying society to provide the right, balanced, accurate information. And it's a shame that in the case of Down's Syndrome, much of that information is out of date, and based on a 'handed down' fear.
iyswim.