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Inside the country where Down syndrome is disappearing
Posted by: mattkime
Date: August 01, 2022 03:45PM
[www.cbsnews.com]

This came up as a topic of conversation elsewhere and I was curious what the forum thought.



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Re: Inside the country where Down syndrome is disappearing
Posted by: SDGuy
Date: August 01, 2022 04:46PM
I'm ok with this.

I know there are pro-life folks who would be against this; my thought is - are those folks willing to adopt and raise (and possibly care for, for life) an unwanted baby who is born with Down syndrome (or some other defect which renders them unable to care for themselves)? Easy enough to proclaim something from afar - but are they ready to deal with the ramifications first-hand?
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Re: Inside the country where Down syndrome is disappearing
Posted by: Lemon Drop
Date: August 01, 2022 05:00PM
I agree it should be up to the couple.

I personally would not have aborted a pregnancy at risk for Downs. I had my second child at age 34 so genetic testing wasn't offered. Neither kid is perfect and neither am I but I'm glad we are all here.

But I understand if another family wanted to make a different choice and they should have that right.

I also understand that in the future this is going to be more fraught as prenatal genetic testing becomes more advanced.

We've already had 2 major countries, India and China, mess up the balance of males and females in their populations by aborting females.



Edited 1 time(s). Last edit at 08/01/2022 05:01PM by Lemon Drop.
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Re: Inside the country where Down syndrome is disappearing
Posted by: cbelt3
Date: August 01, 2022 05:02PM
Having a child with so many disabilities is HARD. You care for them your entire life, and have to set up care after you are gone. My younger brother was disabled (learning/ cerebral palsy/ epilepsy). He was the center of our family’s life. We all shared caring for him and helping him and protecting him. We loved him, but we sure got mad at times. So did he.

I would not change that life for anything, but…. Mrs. Cbelt3 spoke to a geneticist before we were married to find out if our children would have similar disabilities. And we did testing in utero on our youngest as a late in life baby to rule out risk factors (he’s good).
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Re: Inside the country where Down syndrome is disappearing
Posted by: mattkime
Date: August 01, 2022 05:16PM
Quote
Lemon Drop
I had my second child at age 34 so genetic testing wasn't offered. Neither kid is perfect and neither am I but I'm glad we are all here.

Can you explain how 'genetic testing wasn't offered' follows 'I had my second child at age 34'?

MY wife beat you by nearly a decade when we had our second and we did genetic testing.
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Re: Inside the country where Down syndrome is disappearing
Posted by: Lemon Drop
Date: August 01, 2022 05:27PM
Quote
mattkime
Quote
Lemon Drop
I had my second child at age 34 so genetic testing wasn't offered. Neither kid is perfect and neither am I but I'm glad we are all here.

Can you explain how 'genetic testing wasn't offered' follows 'I had my second child at age 34'?

MY wife beat you by nearly a decade when we had our second and we did genetic testing.

I don't understand your question/comment. Your wife had a baby at 44? Of course they are going to do genetic testing.

Or do you mean 24?

No doctor suggested I do genetic testing in 1996.
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Re: Inside the country where Down syndrome is disappearing
Posted by: Ombligo
Date: August 01, 2022 07:18PM
It is no one's business except the parents, and ultimately the mother.



“No persons are more frequently wrong, than those who will not admit they are wrong.” -- François de La Rochefoucauld

"Those who cannot accept the past are condemned to revise it." -- Geo. Mathias
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Re: Inside the country where Down syndrome is disappearing
Posted by: bfd
Date: August 01, 2022 07:42PM
Read a similar story from a few years ago for more angst (if more was needed):

[www.theatlantic.com]

Sorry if the link makes you pay, there are ways to read the story for free (search the forum).

Essentially, Denmark's had their policy in place for more than a decade now. Yes, it's kind of heavy handed. If you've known or worked with any Down syndrome kids or adults, then you know they are different souls. But you also probably know that there are many cases of Down syndrome that do not grow up to have happy, healthy lives. There are comorbidities involved with almost every Down syndrome birth.

Since universal screening was introduced in Denmark, the number of Down syndrome babies has fallen off a cliff. From the Atlantic article, in 2019, only 18 babies with Down syndrome were born in the entire country. (for comparison, about 6,000 Down syndrome babies are born in the US each year)

It does not help to say that Down syndrome children can grow up happy and pretty much healthy because it's not always true in every case. Some Down syndrome children will learn to read, write, and do some pretty "normal" things in their lives. But not all of them. So which one will you get - as a parent, how will you manage?

And how will you deal with a life that could be entirely dependent on you for their sustenance for their lifetime? These are very personal questions with no "one size fits all" answer.

It's a decision that must be left to parents - and it's a huge decision. As the Atlantic article posed it, Suddenly, a new power was thrust into the hands of ordinary people – the power to decide what kind of life is worth bringing into the world.

There is something a little scary about that, and do we really want a world where only the 'best' and 'brightest' are allowed to survive to birth? It is truly an existential question.
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Re: Inside the country where Down syndrome is disappearing
Posted by: pdq
Date: August 01, 2022 08:17PM
Down syndrome kids can be very rewarding. They can also tear couples and families apart. I’ve seen both.

In any case, they require extraordinary care throughout their lives.

Just to be clear, I don’t think the situation is comparable to either aborting a non-desired gender, or accepting only the best and brightest.

PS- Another NYT piece about a woman carrying a fetus with a severe anomaly, diagnosed at 19 weeks.

Quote

The fetus had not formed a skull. Even with surgery, doctors said, there would be nothing to protect the brain, so she would survive at most a few hours, if not minutes, after birth.

… But doctors told her that the fetus’s brain matter was leaking into the umbilical sac, which could cause sepsis and lead to critical illness or even death. Doctors recommended she terminate the pregnancy for her own safety.

But then Roe was overturned.

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… Tennessee allows abortion if a woman’s life is in danger, but doctors feared making those decisions too soon and facing prosecution.

So they said we won’t do it.

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…“They’re just going to let me die?” she remembers wondering.

Even though she and her parents were “against abortion”, they travelled from Tennessee to Georgia, where she passed the gauntlet of protesters around the clinic:

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As they pulled into the parking lot, they drove by a man with signs showing dead fetuses.

“Are all of you OK with killing babies?” he shouted into a megaphone.

Again, this kind of thing is not rare.

Just another case of rigid extremist orthodoxy running into reality.



Edited 1 time(s). Last edit at 08/01/2022 08:18PM by pdq.
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Re: Inside the country where Down syndrome is disappearing
Posted by: mattkime
Date: August 01, 2022 09:14PM
Quote
Lemon Drop
I don't understand your question/comment. Your wife had a baby at 44? Of course they are going to do genetic testing.

Or do you mean 24?

No doctor suggested I do genetic testing in 1996.

Sorry, words hard!

My wife had a baby at 42. I was just trying to understand the relationship between which year and age contributed to genetic testing.



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Re: Inside the country where Down syndrome is disappearing
Posted by: mattkime
Date: August 01, 2022 09:25PM
Anyway, the impetus of this conversation started with a liberal slack group I belong to. Someone posted the url in the context of discussing abortion and a few people were in agreement that using abortion like this is eugenics adjacent. I disagree pretty strongly with that, and as is typical for a topic such as this, neither side budged in their assessment.

I've seen relating abortion to eugenics as a kind of slur and imo there's a fair amount of sloppy logic behind it, overlooking the goals of improving the gene pool and creating rules for other people's reproductive rights.

Anyway, I was wondering if I was particularly out of step. I guess it depends upon who I'm talking to.



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Re: Inside the country where Down syndrome is disappearing
Posted by: Speedy
Date: August 01, 2022 11:16PM
We did genetic testing on our second (and last) born child after my wife had a placental abruption with our first born. First born has had a tough life due to serious and significant health issues connected to the abruption. We would have aborted the second had there been anomalies.



Saint Cloud, Minnesota, where the weather is wonderful even when it isn't.
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Re: Inside the country where Down syndrome is disappearing
Posted by: RecipeForDisaster
Date: August 02, 2022 04:42AM
If I had a kid, the part about Downs I’d be avoiding is the cardiac and feeding problems… they are often delightful kids to work with (I’ve done a lot of work and volunteering with varying abilities including a inclusive preschool), but I would not knowingly want to bring more kids into the world needing heart surgery and G tube feeding. I’m not sure the cardiac issues are well known to most, but they go along with Downs very often.
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Re: Inside the country where Down syndrome is disappearing
Posted by: pdq
Date: August 02, 2022 08:01AM
Quote
mattkime

I've seen relating abortion to eugenics as a kind of slur and imo there's a fair amount of sloppy logic behind it, overlooking the goals of improving the gene pool and creating rules for other people's reproductive rights.

FWIW, the eugenics argument w/r/t Down syndrome is pretty specious, since adults with DS rarely have kids, and cases of DS in fetuses are almost always just one-off errors in chromosome separation.

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All 3 types of Down syndrome are genetic conditions (relating to the genes), but only 1% of all cases of Down syndrome have a hereditary component (passed from parent to child through the genes).

I guess what I’m saying is that except for that 1% of cases, one could never eliminate DS from the gene pool with eugenics.
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