Lonan3 Posted January 4, 2007 Share Posted January 4, 2007 LINK TO STORY This is a story about a girl who will never grow up. Nine-year-old Ashley, who has severe brain damage, has an undiminished life expectancy. But with the use of hormones, her parents have ensured that she remains child-sized, forever. The Seattle-born girl is described by her parents as their Pillow Angel because she stays where they place her - most usually on a pillow. The rare brain condition known as static encephalopathy that she suffers from means she cannot sit or talk and is fed by tube. Three years ago, her parents observed early signs of puberty and became concerned that she would become too large to lift or move - meaning that they would not be able to look after her. After consulting with doctors, Ashley was given a hysterectomy, surgery to prevent breast growth and high doses of oestrogen that have frozen her body at its current height, four foot and five inches. The treatment, known as growth attenuation, is expected to keep her weight at about five stones for the duration of her life. It is believed to be the first time that the growth of a profoundly disabled person has been deliberately inhibited, and the ethics surrounding the treatment for disabled children had never been discussed in mainstream medicine until Ashley's treatment was revealed in the journal Archives of Paediatrics and Adolescent Medicine in October. This week, her parents, who wish to remain anonymous, defended their actions against critics who have suggested that they chose to inhibit Ashley's growth for their own "convenience". "We will continue to delight in holding her in our arms," they said. "Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings... instead of lying down in her bed staring at the TV (or the ceiling) all day long." Some may think that I'm 'copping-out' by not commenting, but the fact is that I'm currently undecided about it and feel a need to think it through a bit more first. At the same time, I thought that others might have missed the story so I decided to bring to the forum. Discussion/opinions welcomed. Link to comment Share on other sites More sharing options...
The Godfather of Manx House Posted January 4, 2007 Share Posted January 4, 2007 Totally against such treatment. Some things just shouldn't be tampered with... ...GOMH*... Link to comment Share on other sites More sharing options...
Foxtrotlima Posted January 4, 2007 Share Posted January 4, 2007 The first thing that sprang to my mind was what are the long term effects of this treatment? It seems to be eugenics at its most extreme. I work in the learning disabilities field, looking after adults with multiple and profound disabilities. They are all taller than me, and it certainly doesn't detract from the standard of care we deliver to them or how much they get out. To say that it would is just ridiculous. The female human body is designed to go through puberty and ultimately the menopause. I am going to read up more on this case as it has truly appalled me. Link to comment Share on other sites More sharing options...
VinnieK Posted January 4, 2007 Share Posted January 4, 2007 I think it's probably the right course of action. It sounds like a drastic procedure, but it also sounds like it will help the parents better care for their child for however long she may live, and hopefully be able to provide a higher standard of life for her than would be possible were she to reach an adult size. Were the procedure not carried out there's a good chance that her parents would not be able to care for her without trying to hire extra care (which in any case is unlikely to provide the 24 hour coverage she presumably requires) and possibly even being forced to renovate their house to better cater for her condition. It sounds cynical to bring money into the discussion, but it matters - by reducing the costs of her care should allow her parents to provide a better home life, and possibly even spend more time with her (instead of working to pay off the costs of installing, say, a purpose built downstairs bedroom and en-suit bathroom that she may need). Link to comment Share on other sites More sharing options...
VinnieK Posted January 4, 2007 Share Posted January 4, 2007 It seems to be eugenics at its most extreme. It's not even close to being eugenics. If it were they'd be less concerned with treating her condition than they would be ridding it entirely from the gene pool. I work in the learning disabilities field, looking after adults with multiple and profound disabilities. They are all taller than me, and it certainly doesn't detract from the standard of care we deliver to them or how much they get out. With all due respect, how many of them are incapacitated, and how many of those do you have to care for for 24 hours a day? An incapacitated adult is very difficult to care for on such a basis, requiring regular attention, being lifted, carried, cleaned, as well as dedicated facilities and furniture. Most families simply can't provide such care, and professional carers brought in can only do so much. The usual result is that such individuals end up in care homes, alone with their condition and miserable from being separated from their families and all they're familiar with. Link to comment Share on other sites More sharing options...
The Godfather of Manx House Posted January 4, 2007 Share Posted January 4, 2007 A very reasoned argument, Vinnie, but still a bridge too far IMO. What level do we accept next ? And who decides the line between convenience / genuine intentions ?... ...GOMH*... Link to comment Share on other sites More sharing options...
thebees Posted January 4, 2007 Share Posted January 4, 2007 My old neighbour and friend has a daughter who is disabled, she is the same age as me and is completely dependant on her mum, meaning she needs to be fed, dressed, toileted (it is necessary for her to wear nappies) and controlled (she has fits and can be quite violent) the lady has cared for the child/adult alone for many years. As this was the only comparison I could make to the above case I considered that both lives would have benefited the use of such medical technology so as such I think its a great thing. I wouldn’t mind some of those hormones for myself, can they make ones that reverse the ageing process too? Link to comment Share on other sites More sharing options...
3v0 Posted January 4, 2007 Share Posted January 4, 2007 From reading the article I think it is probably the right thing to do, although it sounds drastic when you first read it, it genuinly sounds like this girl is going to have a better quality of life from this i.e her dad can carry her to bed rather than having to get into some big mechanical contraption to go up stairs etc... As for "where do you draw the line" in this case it has obviously been carefully thought about, I don't think it would be such a good thing if this was made a general practice. Link to comment Share on other sites More sharing options...
Chinahand Posted January 4, 2007 Share Posted January 4, 2007 I've family friends whose son was similar - mental ability of approximately 6 month old. While little he always came everywhere with them. I've childhood memories of him propped up on his pillow. As he got bigger this became increasingly difficult and he was initially pretty much confined to home, apart from well planned and organized exhibitions, and later, when he became too big for his mum to lift, was moved to a home. This was an extremely traumatic event for the mother who always wanted her son to be a part of the family. Sadly he died at about 25. I really sympathize with anyone in such a situation and can understand why this family have asked the medical authorities to do what they have done. The BBC reports that the treatment went through a full ethics commitee hearing and was approved. These committees have a requirement to take into account the side affects of the treatment and weigh this against the benefits. These are professionals who have to make very very tough decisions and if they agreed to the treatment that is enough for me. Edited: spell like a fool! Link to comment Share on other sites More sharing options...
Ean Posted January 4, 2007 Share Posted January 4, 2007 A very reasoned argument, Vinnie, but still a bridge too far IMO. What level do we accept next ? And who decides the line between convenience / genuine intentions ?... ...GOMH*... It's not that easy, and it is down to medical staff and the parents of the disabled person as to "who decides" whether it is convenience or improving the quality of life. I think it's in a similar vein to the debate on euthanasia (although perhaps not as extreme), it all comes down to the quality of life. And in this case i think we can be pretty certain that the procedures involved have given the girl a better quality of life than she would have otherwise had. Link to comment Share on other sites More sharing options...
P.K. Posted January 4, 2007 Share Posted January 4, 2007 So what exactly is "the quality of life" that this disabled child experiences? Link to comment Share on other sites More sharing options...
The Godfather of Manx House Posted January 4, 2007 Share Posted January 4, 2007 That'll be the quality of life in a body that's had it's biological clock stopped. Which, let's face it, we'd all love yeah ? Erm...hmmm...actuallllllly... The envelope is once again pushed further. Where it will stop, fuck knows... ...GOMH*... Link to comment Share on other sites More sharing options...
Ean Posted January 4, 2007 Share Posted January 4, 2007 Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings... instead of lying down in her bed staring at the TV (or the ceiling) all day long. That quality of life? Link to comment Share on other sites More sharing options...
The Godfather of Manx House Posted January 4, 2007 Share Posted January 4, 2007 So why is currently called "their pillow angel" when she could already be out enjoying this so-called "quality oif life" ? Pertinent question, no ?... ...GOMH*... Link to comment Share on other sites More sharing options...
Pragmatopian Posted January 4, 2007 Share Posted January 4, 2007 Please take the time to read the blog that the parents have created. It goes into great depth and I defy you to come away from it having any opinion other than that they have made an informed choice in the best interests of the happiness and comfort of their daughter. Link to comment Share on other sites More sharing options...
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