1/5/2007
frozen in time
The story of Ashley, a 9-year-old disabled girl, who cannot move and usually stays in the same position she is placed in, on a pillow. What’s at issue is her doctor recommended ‘treatment’, which includes a series of surgical operations (including a hysterectomy) and a regimen of hormones that will keep her small. Her parents, two college-educated professionals, have chosen to remain anonymous. Perhaps this is a good thing; because as the news of the ‘treatment’ are hitting the airwaves, people are upset.
She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmental level since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children’s hospital they devised the treatment: removal of Ashley’s uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.
The parents insist that the treatment, carried out in 2004, was conceived for Ashley’s benefit and not their own ease or convenience. With a lighter body and no breasts, Ashley will have fewer bed sores and lie more comfortably. And a smaller Ashley can be cared for and carried. “As a result we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently instead of lying in her bed staring at TV or the ceiling all day long,” they write.
But as news about the treatment became known, Ashley’s parents were surprised by the virulence of some of the response. Comments on chatboards have included: “Ouch - this smacks of eugenics”; “I find this offensive, truly a milestone in our convenience society”; “This smells, I can’t agree with this”.
Raven has more on this at And Rightly So!
January 5th, 2007 at 6:55 am
Thank you for the link!
Way back in the day, when spinal fusions were first performed, people were upset too. As with many of the medical treatments that continue to be performed on disabled kids- spinal fusions became an excepted, almost expected, surgery to improve the quality of life.
This is an interesting case for sure. I’m not going to judge it now because I have seen both sides of this. These treatments Ashley has had were not required to keep her alive, but rather, to keep her comfortable and at home with her folks. I think a lot of people are upset because this is about her parents convenience- even if they can’t admit that. BUT many of the kids do get institutionalized when they grow- which is not good.
January 5th, 2007 at 7:09 am
I was horrified to read that they removed her breasts, removed her uterus, and artifically induced bone fusion. I do understand, though, how monumentally difficult the care of a grown person is; someone who can’t turn over, who is virtually helpless to move.
We have a friend with a teenage daughter like that. They have hired help to move her, change her,bathe her, and generally care for her, but it’s a tremendous burden on everyone involved, and her parents’ marriage didn’t survive as a result.
The whole thing is heartbreaking.
January 5th, 2007 at 1:02 pm
It is heart-breaking to read such a story, but I don’t feel it’s anyone’s business to pass judgement on the parent’s, not actually being there and in their shoes … we all have to make life-n-death decisions in life; the results are between you and God, whether you made the correct decision or not.
January 5th, 2007 at 1:06 pm
The series of surgeries and hormones are not exactly to save this little girl’s life. They’re to keep her small like a 9-year old. And their removing her reproductive organs including her breasts and fusing her bones together prematurely…this is for the convenience of the caregivers and parents,not because she’s at risk of dying.
I took today off from work to take care of some things, and the errands are pretty much finished, but I was gone all morning! You trade one thing for another, I guess. I got a manicure and pedicure on the advice of a friend who said the pain in my shoulders from the car accident probably has me more tense than I realize. My feet were massaged and my hands, arms and legs. WOWEE did that feel good.
January 5th, 2007 at 1:53 pm
Well; without actually being there and observing the situation first-hand, I can’t positively say what their motive was for what was done to their child.
I feel for ya — I’m still having pain everyday after my car accident (rear-ended by a STUPID GOOK WOMAN running her mouth on a damn cellphone!) and feel better after seeing my Chiropractor twice a month.
You might want to see a Chiropractor instead; if you haven’t seen one already.
January 5th, 2007 at 5:48 pm
Myself, I’d file the ethics of this one under ‘Too Close To Call’. (And, remember, organ transplants were once regarded as morally unsettling.) That said, it worries me that this case will be shoehorned into the wider prolife debate — It shouldn’t be, since, whatever the merits/demerits of the case, this kid’s parents clearly love her to bits and very much want her to live a long and pain-free life.
A prochoicer I work with brought this up today, then went ranting off about how it was like the Charlotte Wyatt case. It isn’t. Nobody working the case of this profoundly-disabled mite thinks she ought to do anything other than live.
January 5th, 2007 at 5:59 pm
The fact remains, though, that when she’s 80, her body will be that of a 6-year old,merely for the convenience of her parents and caregivers. Removing her reproductive organs, even her breasts, is unsettling. The entire thing is unsettling; and it’s not a ‘right to die’ case. At least at this point.
It is unnerving that she has a feeding tube. Perhaps Raven could tell us if she has the feeding tube for the convenience of the staff like Terri Schiavo had, or if it’s necessary because she can’t swallow.
January 5th, 2007 at 6:37 pm
“The entire thing is unsettling; and it’s not a ‘right to die’ case. At least at this point.”
I’m not disagreeing with you, Cao. Maybe I should’ve made myself clearer on this point — I think there are, if you will, two ‘layers’ to this type of issue. First, there’s the debate over life itself (do we have the right to experiment on foetuses, abort babies, euthanize our fellow men). Second, there’re issues of what is, and is not, appropriate medical care (when does medical care become cosmetic/care-for-convenience).
In Britain, at least, I see Ashley’s case being used to blur the distinction between the life/death debate, on the one hand, and the debate about appropriate ‘care’, on the other.
ALL I’m saying is that I don’t want to see that happen. Like you, I find this case unsettling (as I said). I was just trying to point out that I think there’s also a danger that prochoicers will use this case to further their sick cause.
One way to combat this is to take what I think is your line: that this sort of treatment is always wrong. Myself, I don’t feel I can make that call, but I do want to stress that I think lumping Ashley in with cases like Charlotte Wyatt’s or Terri Schiavo’s is wrong. I have a very nasty feeling that the ghouls on the left are trying to do just that.
January 5th, 2007 at 6:52 pm
I think you’re right. But what has me a little troubled is the feeding tube thing. They put inthe feeding tube,and then at some point, they decide to remove it because the quality of life isn’t good enough.
With Terry Schiavo,it wasn’t necessary, because she could swallow. but they gave it to her anyway, and then the fight through the courts had it removed and she died that horrible death. It just gives me the willies,and I don’t mean to be argumentative, I think we’re in agreement on a lot here.
She’s never going to walk, fly a kite, sit at the dinner table,etc.-but when is removing her sexual organs, fusing her bones and giving her hormones so she’ll always be 6-the ‘right’ thing to do? Probably when the child willnever be normal, and they’re looking at how difficult it will be down the line when she’s 125 pounds or 150 pounds, or even bigger than that, and she stillcan’t move, turn over, or anything. I can see, as Raven says, both sides to this. But it sickens me anyway.
January 5th, 2007 at 8:18 pm
The US end of the death-movement are focussing on Ashley’s feeding-tube (hello, Terri)? Gosh, but I hadn’t realised that. Over here, that hasn’t even been mentioned. Our leftists are busy twittering on about how the case proves parents have the ‘right’ to do as they please in a more general sense (hello, Charlotte).
Damn, but these people are ghoulish, aren’t they? Whatever talking-points they pick, in the end everything seems to reduce to their sick desire to see human beings put down like dogs.
January 5th, 2007 at 8:58 pm
Two sides to every story in Life — which side is absolutely 100% correct?
Only God knows…