[Jr_Bullit]

Over the weekend my sweetie and I got into a discussion relating to the two articles below. As he and I tend to agree more than disagree on these issues, I thought I'd ask you guys for your opinion and thoughts.

Part 1

Part 2

After reading Parts 1 and 2 I found myself horribly fascinated by the gory medical details this kiddo has had to go through. I also found, at my most basic level, a kind of horror that we would not let nature run its course.

Obviously, in this case, it doesn't sound like the parents knew before she was born what the genetic defect was, or even that there was one. However, I can see the fact that doctors can keep this girl alive through technology means ammunition for the pro-life cause - however the quality of her life is completely questionable - which to me is ammunition for me to continue to support the pro-choice side of the argument.

Touchy subject, this is, one probably more often whispered between loved ones what you really feel, versus what is PC to utter aloud where polite company might hear you. However, for me at least, this is the main issue behind pro-choice. If you know in advance the type of life your child will lead as a result of having a birth defect, even if those fancy medical guys insist they think they can do something, why is it wrong to consider not bringing the child to term? What will this little girl think when she grows up, her scars heal, and her face remains something strangers turn to look at? Once born, I believe that we should fight to keep children alive as best as possible, but if it is known prior to birth...well what do you guys think?

When is it okay to let science turn a child into a medical guinea pig - which is what this looks like to me? I'm sure her parents would (and justifiably so) defend her life as the best they could provide, they kept her alive as long as possible, but I wonder if they'd known what kind of battles she'd face before hand, if they would have let her come to term.

Just ramblings - my thoughts on this are not fully formed, mostly a lot of grey matter around a few things that do matter to me:
Quality of life for a person
The ability to choose if the consequences can be predicted to the satisfaction of the parents
The desire to fight for life once born
Using technology and medicine to prolong life, unaturally, and painfully...

 

[Skookum]

That's so sad....

This kind of technology and medicine is verging on torture. Patched up solutions after the fact. Eventually it'll be like GATTACA where you can pick and choose what kind of baby you can have, science is inevitably going to win out over alot of backward thought that prevails today. But certainly that same backward thought will also have us use these technologies with an, in some ways, necessary moral circumspection. Well hopefully anyways....

 

[Toshi]

if you actually ask the people who you pity so much, they value their life. i'm sure the kid in the article would, as would kids and adults with osteogenesis imperfecta (look up "rodding osteogenesis imperfecta" if you want something horrible), downs, and other horrible (to the outsider) diseases.

another thing to consider: over 90% of spinal cord injury patients rate their quality of life as good to excellent. would you have anticipated that? i certainly wouldn't have, and this is why we should be very conservative in making the decision of what a worthwhile life constitutes. for some things, like tay-sachs or other maladies that lead to death within a few months, screening and termination may be appropriate, but at least for the girl in the article the prospect that she could live a full and relatively normal life outweighs all.

 

[Just Lookin'...]

Unfortunatley, we can't make accurate external judgements on some else's sense of their own 'quality of life'.

I mean, if I was like Stephen Hawking (amyotrophic lateral sclerosis or ALS) (admittedly, the reverse process - going from 'normal' to 'abnormal') I would have the knowledge and experience to decide if i want to live that life. Thankfully, I can only guess at that life.

What makes it much more difficult is making this decision for someone else when your own life it totally 'normal' - that is, you easily fit in with the rest of society at large.

More debilitating in my experience is mental illness - you 'look normal' but feel all the more alienated because of it.

Now, back to deformities (genetic or otherwise) from pre-birth development.

How does one make a moral decision over something that's going to affect someone who's not even born yet?

Don't get me wrong - i'm pro-choice on several levels - i'm just playing both sides of the coin. I know that if I were having a child, I'd want that child to be as 'normal' as humanly possible.

Friends of mine had their first baby 3 years ago (both of them were in their late thirties) - and yep, you guessed it - Downs Syndrome. You can tell from his face ever since he was about 18 months. He's a good kid and gets along well with other kids. His parents love him. I think his quality of life is good.

I've known others with a tougher row to hoe, however. One girl had a degenerative connective tissue disease that finally killed her when she was 5 years old. Her body rejected it's own skin.

But she had loving parents. Both of whom are still glad they got to know her.

Like i said, tough call. I don't think it's a decision you can honestly make until it's real - the baby is yours and the decision is now.

I can guarantee you this - it won't be a philosophical decision.

 

[Jr_Bullit]

True, but these issues you raise are post-birth....if you could know, in advance, that a) your child has a genetic birth defect that would affect their quality of life in the following ways: XYZ do you think others have the right to force you to have that child?

Personally - I'd rather have the choice. If the child, as in this case, this little girl, is born with a major birth defect that will cause the following problems, and you didn't have a way of knowing prior to her birth that it's there, then I'm all for fighting to keep her going and giving her the best possible life imaginable.

I'm not saying we off anyone who is alive currently and trying to work through problems...my first thought was, if the parents had known, would they have brought her to term at all? We have a lot of pro-lifers on here who argue the birth control argument relating to abortion and such, when I think of pro-choice, I think of situations like this where the parents should be given some sort of right to choose.

As for the kiddo - I just hope it all works out and it wasn't just a fleeting glimpse of a life full of pain, doctors, pins and needles.

(edit) - response made to Toshi's post

 

[Just Lookin'...]

It's a thorny topic.

I'm totally in support of an individual's having final say in their reproductive destiny.

I'm just saying that until an individual, male or female, is confronted with the fact that their growing offspring shows significant defects, you can't make a rational decision.

And in the case of actually being in that position, it probably won't rely on rational thinking.

 

[Toshi]

True, but these issues you raise are post-birth....if you could know, in advance, that a) your child has a genetic birth defect that would affect their quality of life in the following ways: XYZ do you think others have the right to force you to have that child?

actually you can screen for tay-sachs, osteogenesis imperfecta, and downs syndrome... admittedly, you can't screen for whether someone will suffer a traumatic brain or spinal cord injury in later life, but you can screen for the other things i mention, above in this post and in my earlier post.