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I think that Down Syndrome is a very misunderstood syndrome. The way it makes you look dominates how people think about you, without even knowing you. I intera
by nvarsj 6y ago
I think that Down Syndrome is a very misunderstood syndrome. The way it makes you look dominates how people think about you, without even knowing you.
I interact with someone online who has Down Syndrome. It really changed my understanding of it. He can articulate very well when writing, and has a deep passion and understanding on some topics we discuss (like music...). If he hadn't of told me he had Down Syndrome I never would have guessed.
This article points out the rather morbid fact that 90% of down syndrome pregnancies are aborted. I still remember the conversation with the obstetrician regarding my first child, who told us we should screen the pregnancy and implied we should abort if there were any major defects (including down syndrome). I guess this is standard practice, which is kind of sad, since those with Down Syndrome can live fulfilling lives.
- danw1979 6y agoThat 90% may move much closer to 100% with the wider availability of the maternal blood test screening for foetal trisonomies (branded “Harmony test” in the UK) which is supposedly very accurate. My wife opted to have this test for two of her pregnancies at about 13 weeks, both negative. It’s impossible to say what we would have done given a positive result. Everything I hear about the way such a diagnosis is handled by the medical profession suggests that expectant parents will be steered down the route of abortion.
- loevborg 6y agoMy experience in Germany mirrors yours. Although you of course have the choice (not to take the test, not to act on the results), the process felt like it was leading inevitably down the path of aborting the pregnancy in case of a positive Harmony result confirmed by another test. I found the experience, including talking to relatives about the topic, quite unsettling.
- OskarS 6y agoI agree that that stat is unsettling, but I really can’t judge the people making this choice. It’s an impossibly hard situation to be put in, and you can’t be judgmental. Decisions like these are never easy, and never taken lightly by anyone.
- nvarsj 6y agoYeah of course, it is a really tough decision. I think though, as the article points out, doctors have a responsibility to properly educate about the life quality of down syndrome so parents can make an informed choice. Right now, standard medical practice seems to be to just recommend abortion without much information.
- 2lwxxtj 6y ago>which is kind of sad, since those with Down Syndrome can live fulfilling lives. So can people that don't have Down Syndrome.
- rubidium 6y agoIt’s effectively genocide and quite damning on society. I don’t put it squarely on the parents because it is so difficult. My neice has downs. Interactions with her are about the here and now. Joy and life. Fun and wit. Not plans and efficiency and production. Those with downs are modern day prophets for the rest of us to expose the soul-destroying utilitarian ethics of modern society... and we’re killing them!
- 2lwxxtj 6y agoHow is it "damning on society"? Raising normal children is already a massive time commitment, and at the end you get a functioning adult that you don't have to take care of, and which can give you grand children. Why would anyone want a child that takes even more time and has to be taken care of for its entire life?
- canam 6y agoAs the parent of a child with Down Syndrome who is also autistic, I can say it is wonderful experience. He brings us great joy and love, despite his unique needs. I couldn't imagine that anyone who met him thinks he doesn't deserve to exist.
- 2lwxxtj 6y agoDo you have other children? Would you have preferred it if your child with Down Syndrome had not been born that way?
- canam 6y agoI do. I have another son who does not have Down Syndrome. Your question is difficult to answer. His condition is a part of who he is. If he didn't have Down Syndrome he would be a different person. In effect your question is do I wish I had a different son. The answer is no, despite the challenges.
- 6y ago
- gadders 6y agoI always thought there was a certain tension between being against aborting babies with Downs Syndrome but being OK for healthy babies being aborted for lifestyle reasons. [Not OP specifically, just something I have observed]
- watwut 6y agoThat is because what you call "lifestyle reasons" as if we talked about slight unimportant change in lifestyle are actually massively life changing limitations. With lifelong consequences you won't ever be able to avoid and oftentimes literally end of your life as you knew it.
- slothtrop 6y agoIt's on a spectrum. Some are utterly unable to take care of themselves. By going forth with a pregnancy, you take on the risk that outcome can be far worse than exemplified. Chromosomal deletion is one possibility. No one wants to take care of a vegetable, let alone roll the dice on a "milder" case of downs.
- anthk 6y agoThis. Also, potential risk for themselves when the caring persons are not alive any more.
- throwawaysea 6y ago> This article points out the rather morbid fact that 90% of down syndrome pregnancies are aborted. [...] I guess this is standard practice, which is kind of sad, since those with Down Syndrome can live fulfilling lives. I get what you're saying when you mention living a fulfilling life, but there is an impact to others as well. A couple I know decided to have one last child late, and unfortunately had a Down Syndrome pregnancy. Abortion was out of the question for religious reasons. They took joy in the pregnancy, and approached it with lots of motivation. Early on, they got a lot out of the simple joys of raising their Down Syndrome child, which others in this discussion have referenced. However it became more of a problem over time. There is a spectrum of functionality for those afflicted with Down Syndrome and some children have the capability to be more independent, or more manageable, while others don't. In this case, although things started off well, it became apparent that the child would never be functional enough to be independent in any way, despite lots of efforts and investment from the parents. The situation created large stresses and constraints on the family - the parents, the siblings, their friends, etc. It changed what activities they could hold as a family, what social functions they were invited to, where they could live, and so on. Ultimately it destroyed their marriage and has created a lot of complications for them now, in terms of taking care of their now adult child. My exposure to this basically confirmed that I would choose abortion if faced with the same situation, as the burden created on others' lives is simply too much.