Posted on 01/03/2007 1:14:08 PM PST by Lorianne
SEATTLE — This is about Ashley's dignity. Everybody examining her case seems to agree at least about that.
Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. She cannot walk or talk. She cannot keep her head up, roll over or sit up by herself. She is fed with a tube. Her parents call her "Pillow Angel" because she stays right where they place her, usually on a pillow.
Her parents say they feared that their angel would become too big one day — too big to lift, too big to move, too big to take along on a family outing.
And so they decided to keep her small.
In a highly unusual case that is stirring ethical debate in the medical community and elsewhere, doctors at Seattle Children's Hospital and the parents involved are describing how Ashley has received treatment over the last few years designed to stunt her growth.
The treatment, known as "growth attenuation," is expected to keep Ashley's height at about 4 feet 5 and her weight at about 75 pounds for the rest of her life. Doctors expect her to have a normal lifespan. Had she not been given the treatment, doctors estimate, she would have grown into a woman of average height and weight — about 5 feet 6 and 125 pounds.
The parents' decision has drawn criticism and even outrage from some doctors and caregivers, who say such treatment is a violation of a person's dignity. Some say it's also a violation of the medical oath: First do no harm.
(Excerpt) Read more at latimes.com ...
More detail humanizes the hard call:
"But Ashley's parents say the move was a humane one, allowing her to receive more care, more interaction with her younger brother and sister, and more of the loving touch of parents and others who can carry her.
As a result, they say in a written account posted on the Web this week, "we will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long."
I don't know what to think. Prayers for her and her family.
If she were to weigh 125 pounds, with aging parents, she'd be shipped off to an institution and cared for by nurses on rotating shifts. Why would that be a better life?
I'm with you. The parents should be hailed as saints for choosing to care for her.
I agree with you completely. It was a tough, but good choice.
This seems fairly straight forward to me and can't understand where the outrage is coming from. My guess is there isn't all that much in reality. This is clearly a decision made in the best interests of the child by loving parents.
I have a friend, divorced, with a disabled daughter - in a wheelchair, cannot walk. She is now 19, and weighs 185 lbs. No one person can pick her up - it requires at least 2 men - and it is a major problem on a daily basis. The mother (ex-wife) will not face reality and insists her daughter is not overweight, and does not restrict the daughters diet. Because of the excess weight, things a paraplegic can normally do are beyond this girl.
There are no easy choices in these cases. I applaud these parents for doing the best they can and wanting to care for their daughter themselves instead of institutionalizing her.
My 40-year-old sister has CP and Down's Syndrome, I care for her at home; she is 4 foot 4 and 80 pounds (we didn't give her growth-retarding treatments). I would have a terrible time dealing with her if she were of "normal" stature/weight. These parents obviously want to care for her, I don't have a problem with the treatments they gave their daughter.
It is coming from people who have never cared for an adult with horrific bedsores and yeast infections because their loved ones do not have the strength to turn them or bathe them as often as they should. This child will have a much more comfortable and healthy life at this small size.
I think anyone who is not in their position has no right to pass judgment.
What is convenient? Convenient would be to place her in a nursing home where she would lay in a bed all day. At home she has her family around her, taking her places and siblings, they are not asking anybody to come in and help. They are wonderful and to me truly love their child. If you read the entire article, they originally went to the doctor because she was developing into puberty at 6 yrs. old. It was not to keep her small. What would you do if your 6 yr.old daughter started getting breasts and pubic hair? Clearly there are other things biologically going on. Not long ago I read in the newspaper that they now have treatments for kids who are unusually small for their ages, they will now give growth hormones to perfectly normal children who are too short. What these parents are doing is humane and they want her to have a family life, not an institutionalized life.
I totally disagree. Have you ever considered how difficult it would be to have the total care of someone like this child? Someone who could do nothing for herself. Nothing! If she became much bigger as was previously mentioned, the only place that could deal with her in the long run is some institution. At home, the odds are that her parents will probably give her far superior care than a institution would. And stopping a person that cannot take care of herself at any level from going through puberty is a sane thing to do.
I took care of my mother last year until she passed away and she was by no means a large woman (5'3", 125 lbs) and it took two people to just re-position her in the bed several times a day.
Sometimes there are no good choices and I think these people have made the best decision under the circumstances they're faced with.
Perhaps a little more thought (as well as sympathy, empathy?) should be given before such a reactionary kind of comment is made.
Lord, please grant Your strength to this family.
I agree....
the saddest,
Saddest and I mean saddest thing I've ever seen is the institutionalization of a child that has grown out of the parents ability to care for them. Literally...too large, heavy, difficult to care for in the most basic ways. The child is lost and confused in an alien environment, being cared for by strangers who don't 'know' them....their quirks etc.
And for fun, those who don't get it, I recommend you google 'decubitus ulcers' to see what happens to those who can't be moved as frequently as they need.
All things considered, it's far more than a matter of convenience, as even a casual reading of this article should make clear.
I'm sure the family cares a lot more for her than you do ... perhaps you should give them the benefit of the doubt.
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