So where is the cut-off for the eugenicists on this thread then? (Because yes, once you start deciding who has a "right" to be born, that's what you are: you are deciding that someone's life wouldn't be worth living. Nice.)
Should people with family histories of cancer & heart disease not be having children? Or is that ok because those issues will mostly happen in later life. People with asthma? And what about people with mental illnesses where there's known to be a pattern of inheritance, like anorexia, or schizophrenia? Surely, by your logic, it's selfish to take the risk of condemning their offspring to painful lives - and isn't protracted suffering worse than a short life? If we want to hit some REALLY contentious ground, what about the Ashkenazi Jews? They have horrifically high chances of things like cystic fibrosis, Tay-Sachs & Canavan Disease, a brutal thing that destroys brain tissue: www.webmd.com/children/tc/ashkenazi-jewish-genetic-panel-ajgp-what-are-ashkenazi-jewish-genetic-diseases
I don't know what it's like not to be in some degree of pain. It's my normal. Massive doses of powerful painkillers keep things bearable though. And it's my normal. It doesn't make the world a terrible place for/to me. Of course, my disabilities are far less severe than many - though how much they'll shorten my life depends on whether or not I have the Worst Subtype of my Syndrome rather than crossovers with it. Genetic testing has stalled again & tbh I'm not sure I want to know I could suddenly drop down dead: it would REALLY mess with getting travel insurance. My spine might never actually get round to paralysing me though: would starting a book be in bad taste? I have epilepsy & severe brittle asthma & assorted other bits of broken - & my parents had no idea any of it was coming. My beloved niece (who at 6y5m is almost 4 years past the life expectancy for children with her disability) is severely disabled because of the stage in her pregnancy my sister had gastroenteritis at - again, none of us were expecting it. And a friend's two longed-for children died from the same condition, unsuspected until the younger was a toddler.
So really, if we're trying to ensure no child suffers, nobody should have children. Any child can be born with, or later acquire, a disability. Or is there an acceptable level of risk? I can't have children, so is this statistic maybe on a handout parents are given? Does acceptability level vary by disability?
As a PP said, the disingenuousness of the title of this thread is really quite sickening. It will attract people with experience of this dilemma - the parents & families of these children; surviving siblings; close friends; and people with disabilities. It's a sensitive subject & the OP is showing rather less sensitivity than half a brick in a sock.
Also, again with the "childless-so-may-be-missing-something": aren't all parents choosing to have children for themselves? It's not some mad form of altruism, it's the desire to procreate. And when/where to do so & how many children to have is determined by the wishes of the parents mediated by external factors like age/income/domicile. Well in France you still get medals for having children, I suppose, but being motivated to collect those would be seriously weird - and still not Thinking Of The Child. I understand the logic of saying "I wouldn't have another child if they might have the same severe disability because I'd have concerns about my ability to provide care" or similar - but that's very different from the blanket "they're not thinking of the child". Thing is, they absolutely are. They've known & loved a child with the condition. They know what it means. And they're willing to risk losing a child to love them a while - how brave to knowingly & willingly face that kind of pain. They believe that those short lives are fruitful & of worth. And I don't really think anyone here has any business to suggest otherwise - how happy would you be to be told you shouldn't have had your child & their life was deemed worthless by people because they had (or lacked) certain physical characteristics?
(And so we're clear, while I'm Catholic, yes, I'm not on some big pro-Life kick here. Am meaning parents having right to TTC & to choose to continue pregnancies if they wish, iyswim? I totally understand that not everyone would feel able to, especially with disabilities incompatible with life & don't judge them for that: I can't imagine what a horrendous choice it must be to make, especially in the case of a longed-for & long-tried-for baby. But I very firmly believe parents shouldn't be judged for choosing to continue pregnancies if screenings identify disabilities/TTC when there's a [high] risk the baby will be [severely] disabled, either.)