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I think there’s a difference between appreciating those among us who have it for their perspective and differences and wishing it upon your child. I admit I wa

by nkrisc 1y ago

I think there’s a difference between appreciating those among us who have it for their perspective and differences and wishing it upon your child. 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.

afavour 1y ago
Honestly it’s confounding to even think about it. Aborting a fetus with Down’s syndrome? Feels cruel to deprive someone of life for that. But if it meant you went on to have another child you otherwise wouldn’t have then you’re giving life. I think at a certain point you can’t consider this stuff rationally.
- nkrisc 1y ago
  At some point you have to choose an arbitrary line in the sand, or otherwise the universe is a single being. All lines are arbitrary.
  - smeej 1y ago
    The line between "haploid gametes" and "diploid organism" doesn't seem arbitrary. There's a clear and meaningful difference between a gamete and an organism from a biological perspective.
    - colordrops 1y ago
      You are not talking about the same thing as the person you are replying to.
- move-on-by 1y ago
  My partner and I tested for it. We had a discussion and agreed a positive down’s result would not affect our decision to have the baby, but we were testing for other things anyway and it seemed like having the information earlier rather then later would help up prepare.
- devonbleak 1y ago
  I have a cousin with DS. You have to be committed and have the means to raise a child with extreme needs. Many of them will live with their parents their entire lives and will not develop cognitively beyond their tweens (hence the Britney Spears anecdote above). The ones that do move out tend to have to go to a place that specializes in assisting them. They can also have pretty extreme health issues. 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.
  - Loudergood 1y ago
    The true challenge is what happens after those caregivers pass on.
  - smeej 1y ago
    As the percentage of adults of ordinary abilities who fail to launch continues to rise, I wonder if we'll stop seeing this as a deficit specific to DS and other intellectual disabilities.
  - vtbassmatt 1y ago
    I think this point would be better made without using the word “extreme” so much. All children bring new challenges; kids with DS often bring more; my child with DS has never, ever been an “extreme” challenge (just like most of the other families with kids with DS we know). There are definitely outliers where the “extreme” applies, but it’s not a helpful way of thinking about DS in general.
    - magicalhippo 1y ago
      From this[1] list of associated complications one can read: 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/associated https://www.nichd.nih.gov/health/topics/down/conditioninfo/a... [2]: https://pmc.ncbi.nlm.nih.gov/articles/PMC9387748/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9387748/
- nine_k 1y ago
  At 2 months, there's still no "someone" to speak of. It's an inch long, with some foundational structures of the nervous system beginning to form.
- mixdup 1y ago
  How does the reasoning behind the choice to end a pregnancy matter? If abortion is acceptable at a given point in pregnancy, the reason behind making the choice shouldn't be "cruel". How would it be any less cruel if it was a healthy pregnancy but the woman was not ready to raise a child? 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
xupybd 1y ago
My friends baby tested positive for down syndrome in one of the early screenings. They suggested termination. When my friend asked what the chances were they said on that test they had a 1 in 100 chance of down syndrome. That baby did not have down syndrome and is now a happy seven year old.
- SecondHandTofu 1y ago
  What is your point, that variance exists? I'm not sure I'd play Russian roulette even with a 100 chamber cylinder. 99 people might come away with an anecdote though.
  - xupybd 1y ago
    My point is simply to tell an anecdote that illustrates the different views on down syndrome babies.
- namenotrequired 1y ago
  Wait, am I reading this wrong or did they suggest abortion to avoid a mere 1% risk of Down syndrome?
  - mrheosuper 1y ago
    1% of completely ruining your life and your baby life ?. Not a chance i would take personally.
  - deleted 1y ago
    [deleted]
- walthamstow 1y ago
  We were given 1 in 21 from the nuchal transparency on the 12 week scan, then we did CVS testing to find out for sure. 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.
- munksbeer 1y ago
tmsh 1y ago
I agree on the surface. But where do we draw the line of choosing what we think (in our very limited human understanding of future events) is better for a child? Soon it’s GATTACA. As an extreme counter example consider if you could choose the race of a child. Or their melatonin levels. You might think one is “easier” for the child or even “better” for a happy life or something, but then at what point do you have that “right”? 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?

by nkrisc 1y ago

afavour 1y ago

Honestly it’s confounding to even think about it. Aborting a fetus with Down’s syndrome? Feels cruel to deprive someone of life for that. But if it meant you went on to have another child you otherwise wouldn’t have then you’re giving life. I think at a certain point you can’t consider this stuff rationally.

nkrisc 1y ago
At some point you have to choose an arbitrary line in the sand, or otherwise the universe is a single being. All lines are arbitrary.
- smeej 1y ago
  The line between "haploid gametes" and "diploid organism" doesn't seem arbitrary. There's a clear and meaningful difference between a gamete and an organism from a biological perspective.
  - colordrops 1y ago
    You are not talking about the same thing as the person you are replying to.
move-on-by 1y ago
My partner and I tested for it. We had a discussion and agreed a positive down’s result would not affect our decision to have the baby, but we were testing for other things anyway and it seemed like having the information earlier rather then later would help up prepare.
devonbleak 1y ago
I have a cousin with DS. You have to be committed and have the means to raise a child with extreme needs. Many of them will live with their parents their entire lives and will not develop cognitively beyond their tweens (hence the Britney Spears anecdote above). The ones that do move out tend to have to go to a place that specializes in assisting them. They can also have pretty extreme health issues. 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.
- Loudergood 1y ago
  The true challenge is what happens after those caregivers pass on.
- smeej 1y ago
  As the percentage of adults of ordinary abilities who fail to launch continues to rise, I wonder if we'll stop seeing this as a deficit specific to DS and other intellectual disabilities.
- vtbassmatt 1y ago
  I think this point would be better made without using the word “extreme” so much. All children bring new challenges; kids with DS often bring more; my child with DS has never, ever been an “extreme” challenge (just like most of the other families with kids with DS we know). There are definitely outliers where the “extreme” applies, but it’s not a helpful way of thinking about DS in general.
  - magicalhippo 1y ago
    From this[1] list of associated complications one can read: 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/associated https://www.nichd.nih.gov/health/topics/down/conditioninfo/a... [2]: https://pmc.ncbi.nlm.nih.gov/articles/PMC9387748/ https://pmc.ncbi.nlm.nih.gov/articles/PMC9387748/
nine_k 1y ago
At 2 months, there's still no "someone" to speak of. It's an inch long, with some foundational structures of the nervous system beginning to form.
mixdup 1y ago
How does the reasoning behind the choice to end a pregnancy matter? If abortion is acceptable at a given point in pregnancy, the reason behind making the choice shouldn't be "cruel". How would it be any less cruel if it was a healthy pregnancy but the woman was not ready to raise a child? 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

xupybd 1y ago

My friends baby tested positive for down syndrome in one of the early screenings. They suggested termination. When my friend asked what the chances were they said on that test they had a 1 in 100 chance of down syndrome. That baby did not have down syndrome and is now a happy seven year old.

SecondHandTofu 1y ago
What is your point, that variance exists? I'm not sure I'd play Russian roulette even with a 100 chamber cylinder. 99 people might come away with an anecdote though.
- xupybd 1y ago
  My point is simply to tell an anecdote that illustrates the different views on down syndrome babies.
namenotrequired 1y ago
Wait, am I reading this wrong or did they suggest abortion to avoid a mere 1% risk of Down syndrome?
- mrheosuper 1y ago
  1% of completely ruining your life and your baby life ?. Not a chance i would take personally.
- deleted 1y ago
  [deleted]
walthamstow 1y ago
We were given 1 in 21 from the nuchal transparency on the 12 week scan, then we did CVS testing to find out for sure. 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.
munksbeer 1y ago

tmsh 1y ago

I agree on the surface. But where do we draw the line of choosing what we think (in our very limited human understanding of future events) is better for a child? Soon it’s GATTACA. As an extreme counter example consider if you could choose the race of a child. Or their melatonin levels. You might think one is “easier” for the child or even “better” for a happy life or something, but then at what point do you have that “right”? 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?