This is interesting news, for the lack of a better word. I've met more than one person with downs syndrome. They have definitely enriched my life and shown me a different way of looking at the world.
I admit I was absolutely relieved when pre-natal screening was negative for it, both times.
But if that was the hand we were dealt, then I’d take it. But that doesn’t mean I want it.
I think at a certain point you can’t consider this stuff rationally.
All lines are arbitrary.
Yes, they can be beautiful people that bring light to others around them, but those others also don't typically get exposed to the behind the scenes struggles of the entire family to cope with this.
Some people are prepared to do this; I don't judge the ones that decide they're not. I would hate for someone to go into it not understanding what they're signing up for.
People with Down syndrome are much more likely to die from untreated and unmonitored infections than other people.
Children with Down syndrome are much more likely than other children to develop leukemia
Children with Down syndrome are more likely to have epilepsy [...] Almost half of people with Down syndrome who are older than age 50 have epilepsy.
And from this paper[2]:
Clinical research and longitudinal studies consistently estimate the lifetime risk of dementia in people with Down syndrome to be over 90%. Dementia is rare before the age of 40 years, but its incidence and prevalence exponentially increase thereafter, reaching 88–100% in persons with Down syndrome older than 65 years. [...] In a longitudinal study of adults with Down syndrome, dementia was the proximate cause of death in 70% of cases.
Saying they can have extreme health issues does not seem excessive given the above IMHO.
[1]: https://www.nichd.nih.gov/health/topics/down/conditioninfo/a...
https://www.ucsf.edu/news/2017/11/408906/survivors-childhood...
Aside from that, it is actually hard to paint an accurate picture of today with historical data for people with Down Syndrome as the childhood Trisomy 21 strategies have improved and been implemented in the past 20-30 years. 60 years ago kids with Trisomy 21 were moved into institutions. Kids 30 years ago got some basic treatments to keep them alive. Now kids get all kinds of screenings for hearing, vision, thyroid, heart conditions before problems develop. Turns out it's very difficult to grow, learn and thrive when your thyroid doesn't work, or your cardiovascular system wasn't circulating enough oxygen.
There are more struggles for sure, including intellectual disabilities, but many more kids are doing significantly better than their past generations. It costs more, is more work, but like the parent poster said, my experience certainly isn't extreme. We go to more doctor's appointments, have IEP meetings, and she's in speech therapy. She's generally been pretty healthy, happy and very active.
It was scary when she was born. We were given a pamphlet with a list of things similar to your first link. The reality though is she's more likely to have those than the general population, but some of those things are very rare. 100x very rare is still rare. Having all of those issues would be even more rare. The greater point though is that any kid can have those issues too.
The epilepsy link seems to conflict with what I've seen. https://pubmed.ncbi.nlm.nih.gov/31391451/ https://www.downs-syndrome.org.uk/about-downs-syndrome/healt...
Both of those put it closer to 10% sometime in their life, with about half of those at birth.
For the record, I'm pro-choice. It's just kind of weird that people are OK with abortion but only in weird certain circumstances. I get timing--if a fetus is viable, why someone would think that's too late to make that choice. But not the motivation behind it
That baby did not have down syndrome and is now a happy seven year old.
Terminating on 1/100 without any further testing seems crazy to me. Of course, our scans and screening were all 'free' on the NHS, so there was no cost to getting extra data.
I think the doctor felt that early termination was a better result than later termination.
When he told me this story he was confused as to why they didn't start by finding out if the parents would keep the baby regardless. He saw it as a waste of resources as in their situation termination was never on the cards.
https://healthed.govt.nz/products/antenatal-screening-and-te...
I’m very pro-science but I also feel for the people with downs who are like - what? They’re going to end everyone like me in the future?
But I will observe that when such treatments become available, such conditions become a marker of lower socioeconomic class and the people with the conditions get treated less well by society.
This is why we need a better healthcare system.
FTFY
It doesn’t seem like a very out-there interpretation of your post, maybe it is wrong, though. In particular the implication that I’ve got in parenthesis is, for sure, reading between the lines and maybe wrong.
But I don’t really get the response of “This isn’t responsive to my comment.” It doesn’t seem to move the conversation forward or clarify anything. Seems like a dead-end. What’s the point?
Given that this is also true of universal health insurance and the US government also doesn't pay for that...
All that above is to say that I wonder if some folks in Down Syndrome might actually prefer their status quo abnormal development?
Don't get me wrong, I think it'd be great if society could give these people more than poverty after their parents die, but as it stands, unless that person was born into wealth they are looking at misery when the state becomes their caretakers.
I have a child with a server mental disability, I love them pieces, but frankly what happens to them after I'm gone is one of my biggest concerns.
That's the hard reality I wish people hand wringing about the ethics of avoiding down syndrome would confront. It's one thing to call them a blessing, but are you going to push and advocate for government spending so these blessings don't end up in a hellhole when they are no longer cute children?
What are the ethics (and societal obligation) of supporting someone who’s had a severe stroke? Or how about a traumatic brain injury from a car accident? Oxygen deprivation from near drowning? If these are different from a congenital condition like DS, why?
If someone gets cancer, then yeah they should be covered such that they aren't made homeless because of their disease.
If someone has a stroke that leaves them unable to work, again a social safety net that keeps them from being homeless should be in place.
The ethics are pretty simple. It's reasonable for a good society to support those in need through force of taxation. Just like it's good for a society to keep the water clean through force of taxation and regulation. Everyone benefits or has the potential to benefit from such a universal system that protects them from circumstances outside their control.
If that is not a benefit then I'm not sure what is.
That's a benefit.
- People who have DS: https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/pdf/nihms37...
- Siblings of people with DS: https://doi.org/10.1002/ajmg.c.30101
Cochlear implants are reversible. A genetic disease is not.
They permanently destroy hair cells of the inner ear during surgery to make direct electrical contact, so removing them won't restore your pre-implant level of hearing.
It's usually a moot point if your hearing's bad enough to be a candidate for implants, tho.
I ask because segregation like that was considered standard of care decades ago, but has not been in decades now too, so if it was recent, it's not following current best practices, and if it was long ago, it's worth noting that this is no longer the standard of care, indeed because it wasn't helpful and people would not choose it.
I’m not arguing for either side of the treatment/screening debate here, but vehemently against an apartheid-like view on how people with disabilities should be treated, i.e. not as outcasts but as fellow humans.
Reality is that the vast majority of families don’t want a facility in their neighborhood. If downs could be prevented its an overall positive outcome. I wish nothing but happiness for those already affected
Maybe you’re right and this situation was terrible for everyone. Is this arrangement required? Is it the best we can do?
I don’t think most people would choose to live a life with many common afflictions. I certainly wish my lower back didn’t hurt all the time. That doesn’t invalidate my existence, and neither does my son’s Down syndrome invalidate his.
Also they had an ambulance or fire truck there at least once every couple months.
[1] https://kffhealthnews.org/news/article/adults-with-down-synd...
Misquote. The statement was "What's better for them should be the overriding concern and that's to have a normal development".
https://news.ycombinator.com/newsguidelines.html
p.s. This isn't a response to this particular comment, but to the account's overall pattern of behavior, which is way over the line.
yes, naturally, almost every post I make on my throwaways is something political, in response to existing political comments or submissions, which are evidently allowed.
using throwaways to protect oneself from the terminally online crowd is pretty much a necessity in the current year, unless your values and opinions are firmly in the middle of the Overton window. and even then, there are many opinions that were universally okay 15 years ago can be used against you now. I've seen it happen time and time again.
This makes me think that you might not have taken in the essential bit, which is the pattern of an account's behavior. Was that not clear from the above?
In case it helps, the issue is that we don't want accounts to use HN primarily for arguing about politics or ideology. That's an important test and has proven to be one of the more reliable ones, in terms of whether an account is using HN as intended or not (https://hn.algolia.com/?sort=byDate&dateRange=all&type=comme...)
Separately from that, looking at https://news.ycombinator.com/posts?id=123yawaworht456, I see other reasons to ban such an account—you've routinely been breaking HN's rules in plenty of ways which have nothing to do with your specific opinions. If your motivation is simply to protect yourself, as you say here, then I wonder why that would be.
I’m pretty sure most scientists would consider being able to communicate effectively with your own species, “normal”. Regardless of what animal you are. Just like it’s normal to have 5 fingers as a human. But some humans have more or less. That’s just…life.
No need to be unnecessarily sensationalist. I do agree that using the term “normal” should give someone pause. But warning bells? Depends on context…like everything in life. :)
We should not let compassion for these people obstruct some basic facts. My only consideration would be the potential risks and side effects that are to be expected for any medical intervention. But if we were expecting a child that was diagnosed with Down Syndrome, I would not hesitate for a second to give this child the chance for a normal life. And us parents the chance for normal parenthood.
Please cite your sources and show your work.
My child with Down syndrome is a giant pain in my ass, I worry about him constantly, and there are days where I wonder “why me?”
The same is 100% true about my typically-developing daughter.
Down syndrome has nothing to do with parent outcomes. Society refusing to actually provide support is the issue here.
It is a hard life for everyone involved.