owl Posted January 5, 2007 Share Posted January 5, 2007 Seattle parents defend treatment for disabled daughter SEATTLE (Reuters) - The parents of a severely disabled 9-year-old girl given doses of estrogen to stunt her growth and a hysterectomy to prevent menstrual cycles defended their treatment decisions as necessary for their child's quality of life. The parents of Ashley' date=' who cannot walk or talk and has the mental ability of a baby, made their first public statements about her treatment in a blog posting this week after her doctors detailed the growth-attenuation treatment in a medical journal in October. Ashley's last name has not been disclosed. The treatment, which started when Ashley was six, drew criticism from other doctors and has stirred up an ethical debate about whether stopping normal life development overstepped the bounds of medical treatment. Ashley's parents, who live in Seattle and did not disclose their names, said the effort is a more humane solution for the girl who suffers from an irreversible brain impairment called static encephalopathy. "Ashley was dealt a challenging life and the least that we could do as her loving parents and caregivers is to be diligent about maximizing her quality of life," her parents wrote. "A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver." In the post on http://ashleytreatment.spaces.live.com/blog/ Ashley's parents said the decision to adopt this course of treatment for their "pillow angel" -- she stays right on the pillow where they leave her -- was not a difficult one. High doses of estrogen should keep Ashley's height and weight near current levels at 4ft 5 in and around 75 lbs (34 kg). "Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings," they said. Without the treatment, Ashley would grow to be a 5ft 6in woman weighing 125 lbs (57 kg), according to normal growth estimates. The parents also said doctors had performed a hysterectomy so Ashley would not have to deal with discomfort related to menstrual cycles and to eliminate the possibility of uterine cancer. They also removed her breast buds to limit the development of breasts, they added. Arthur Caplan, a medical ethicist at the University of Pennsylvania, said the "do no harm" rule governing physicians is very powerful and "stopping growth is not the ethical way to head. "Puberty, growth (and) aging happen to all of us and there are plenty of people out there who will require help from family or society," Caplan told Reuters. "The solution isn't to take every person who is schizophrenic or autistic or behaviorally disoriented and keep them in a child-like state." David Fleming, a physician who is director of the Center for Health Ethics at the University of Missouri, said "Only history will know and only time will be able to witness whether they (the parents) made the right decision. It seems likely they were acting in the best interest of the child." Ashley's parents started to consider this course of treatment in 2004 when she began to show early signs of puberty. Before proceeding with the surgeries or estrogen treatment, they needed to gain approval from a 40-person ethics committee at Seattle Children's Hospital. http://today.reuters.com/news/articlenews....xml&src=rss What do YOU think? Quote Link to post Share on other sites
viatroy Posted January 5, 2007 Share Posted January 5, 2007 I think they're more thinking of their own convenience than her quality of life. Quote Link to post Share on other sites
embiggen Posted January 5, 2007 Share Posted January 5, 2007 I think they're more thinking of their own convenience than her quality of life. I totally agree. in my opinion, she should be allowed to develop like a normal human being. Quote Link to post Share on other sites
Edie Posted January 5, 2007 Share Posted January 5, 2007 Jesus. I wouldn't want to have to make that decision. In truth, they are the ones closest to the situation, and therefore are best able to be the judges. I don't know if I could do it, though. I am just glad that they had to get approval from a 40 person ethics committee before they could go ahead. EDIT: I didn't/won't vote. Quote Link to post Share on other sites
caliber66 Posted January 5, 2007 Share Posted January 5, 2007 In truth, they are the ones closest to the situation, and therefore are best able to be the judges. No way in hell I'm in any way qualified to comment on this situation. I'll leave that to Bill Frist. Quote Link to post Share on other sites
cryptique Posted January 5, 2007 Share Posted January 5, 2007 I did not vote. Quote Link to post Share on other sites
viatroy Posted January 5, 2007 Share Posted January 5, 2007 I am just glad that they had to get approval from a 40 person ethics committee before they could go ahead. ah, missed that. I abstain. Quote Link to post Share on other sites
embiggen Posted January 5, 2007 Share Posted January 5, 2007 oh, whatever! Quote Link to post Share on other sites
owl Posted January 5, 2007 Author Share Posted January 5, 2007 Is allowing life to get more cumbersome for a severely disabled person is any more right or wrong than having the surgery? If the disabled person doesn't know the difference, does it matter? (Just askin') Quote Link to post Share on other sites
Mr. Heartbreak Posted January 5, 2007 Share Posted January 5, 2007 Since she has the mental ability of a baby, it seems pretty darn ethical. Their blog shows that they considered the issues carefully and made the right decision ... like the fact that the more a person weighs, the more problems they will develop with bedsores, which can lead to serious infections. They even considered what many think of as the unthinkable: the possibility of future pregancy by an abusive caregiver, which does happen. Seems they were quite thoughtful and deliberate in this. Good for them. Quote Link to post Share on other sites
bjorn_skurj Posted January 5, 2007 Share Posted January 5, 2007 Since she has the mental ability of a baby, it seems pretty darn ethical. Their blog shows that they considered the issues carefully and made the right decision ... like the fact that the more a person weighs, the more problems they will develop with bedsores, which can lead to serious infections. They even considered what many think of as the unthinkable: the possibility of future pregancy by an abusive caregiver, which does happen. Seems they were quite thoughtful and deliberate in this. Good for them.I agree. Quote Link to post Share on other sites
Beltmann Posted January 5, 2007 Share Posted January 5, 2007 No way in hell I'm in any way qualified to comment on this situation.My wife and I were discussing this yesterday, and arrived at the same conclusion. Quote Link to post Share on other sites
Guest tandylacker Posted January 6, 2007 Share Posted January 6, 2007 I say it is worth a shot. Maybe it won't work and 'Ashley' won't live a happy life. But maybe she will and maybe people will see that and want the same for their kid. Not that there is anything wrong with people like 'Ashley', but it is not like they are doing this to a perfectly normal kid. Quote Link to post Share on other sites
anodyne Posted January 6, 2007 Share Posted January 6, 2007 this question would be a lot dicier if we were debating euthanasia for someone with these issues. if it were my kid and based only on the small amount i know from this article, i'd be inclined to make the same decision. Quote Link to post Share on other sites
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.