- Joined
- Dec 26, 2003
- Messages
- 9,353
http://news.bbc.co.uk/1/hi/world/americas/6229799.stm
This must be the weirdest story of the day - a very tricky moral dilemma - somehow I find it very disturbing - it sets a nasty precedent imo.
Previously surgery without consent was always done to counter some illness like removing a cancer - now they have expanded the notion of 'in the patients interest' to cover non-lifesaving surgery.
In this case although the parents deny its for their convenience they later state it was to make her easier to move around and make her light enough for the grandparents to look after her which is convenience???
If you follow this path a little further you could allow surgery to amputate her arms and legs on the basis that shes easier to move around - weighs less and is protected from thrombosis in her limbs - you see how easy it is to make a reasonable sounding medical case of the most extreme surgery.
Finally - I think the whole thing diminishes her as a human being - she's practically reduced to the level of a pet - the owners decide to have her spayed - perhaps they will also have her 'put down' - surely a human being who cannot make their own decisions should be protected by society from this sort of maltreatment?
Reproduced below for your convenience.
Treatment keeps girl child-sized
Ashley's parents refer to their daughter as "Pillow Angel"
Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.
Along with hormone doses to limit her growth, Ashley's parents also opted for surgery to block breast growth and had her uterus and appendix removed.
They say the treatment will help to improve her quality of life.
Ashley's parents, Seattle residents who have not given their names, went public over their daughter's treatment in a blog launched on 1 January.
Their decision came after information about Ashley's case was published in a US medical journal last year, triggering considerable debate and criticism.
Faced with Ashley's medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life
Ashley's parents
'Frozen girl' medical debate
Ashley's parents say that because she will remain the weight of a child, it will be easier for them to move her around, bathe her and involve her in family activities - movement that will benefit her physical and mental well-being.
Dr Douglas Diekema from the University of Washington in Seattle, who was on the ethics committee that gave the go-ahead for Ashley's treatment, told the BBC that the panel agreed "because the parents convinced us it was in fact in this little girl's best interests".
"If she were smaller it would be much easier for them to continue to provide a much more personal level of care," he said.
But Agnes Fletcher of the UK's Disability Rights Commission said is was "unnecessary medical treatment to deal with what is essentially a social problem", referring to "the poverty and lack of support" faced by families with disabled children.
'Improve her life'
Ashley's parents wrote in their blog: "A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver.
The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby
Ashley's parents
"Rather, the central purpose of the treatment is to improve Ashley's quality of life."
Ashley has static encephalopathy, a rare brain condition which will not improve. Her parents call her "Pillow Angel", because she does not move from wherever they put her, usually on a pillow.
The couple decided three years ago to take steps to minimise their daughter's adult height and weight.
In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.
Abuse fears
Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.
"Ashley has no need for her uterus since she will not be bearing children," they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.
HAVE YOUR SAY
They have my every good wish. I'm sure she's in safe hands.
SD, UK
Send us your comments
The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.
The removal of the girl's breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.
The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.
"If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity," they said.
"The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."
This must be the weirdest story of the day - a very tricky moral dilemma - somehow I find it very disturbing - it sets a nasty precedent imo.
Previously surgery without consent was always done to counter some illness like removing a cancer - now they have expanded the notion of 'in the patients interest' to cover non-lifesaving surgery.
In this case although the parents deny its for their convenience they later state it was to make her easier to move around and make her light enough for the grandparents to look after her which is convenience???
If you follow this path a little further you could allow surgery to amputate her arms and legs on the basis that shes easier to move around - weighs less and is protected from thrombosis in her limbs - you see how easy it is to make a reasonable sounding medical case of the most extreme surgery.
Finally - I think the whole thing diminishes her as a human being - she's practically reduced to the level of a pet - the owners decide to have her spayed - perhaps they will also have her 'put down' - surely a human being who cannot make their own decisions should be protected by society from this sort of maltreatment?
Reproduced below for your convenience.
Treatment keeps girl child-sized
Ashley's parents refer to their daughter as "Pillow Angel"
Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.
Along with hormone doses to limit her growth, Ashley's parents also opted for surgery to block breast growth and had her uterus and appendix removed.
They say the treatment will help to improve her quality of life.
Ashley's parents, Seattle residents who have not given their names, went public over their daughter's treatment in a blog launched on 1 January.
Their decision came after information about Ashley's case was published in a US medical journal last year, triggering considerable debate and criticism.
Faced with Ashley's medical reality, as her deeply loving parents, we worked with her doctors to do all we could to provide Ashley with the best possible quality of life
Ashley's parents
'Frozen girl' medical debate
Ashley's parents say that because she will remain the weight of a child, it will be easier for them to move her around, bathe her and involve her in family activities - movement that will benefit her physical and mental well-being.
Dr Douglas Diekema from the University of Washington in Seattle, who was on the ethics committee that gave the go-ahead for Ashley's treatment, told the BBC that the panel agreed "because the parents convinced us it was in fact in this little girl's best interests".
"If she were smaller it would be much easier for them to continue to provide a much more personal level of care," he said.
But Agnes Fletcher of the UK's Disability Rights Commission said is was "unnecessary medical treatment to deal with what is essentially a social problem", referring to "the poverty and lack of support" faced by families with disabled children.
'Improve her life'
Ashley's parents wrote in their blog: "A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver.
The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby
Ashley's parents
"Rather, the central purpose of the treatment is to improve Ashley's quality of life."
Ashley has static encephalopathy, a rare brain condition which will not improve. Her parents call her "Pillow Angel", because she does not move from wherever they put her, usually on a pillow.
The couple decided three years ago to take steps to minimise their daughter's adult height and weight.
In July 2004 Ashley began hormone treatment, through patches on the skin, that is expected to reduce her untreated height by 20% and weight by 40%.
Abuse fears
Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.
"Ashley has no need for her uterus since she will not be bearing children," they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it.
HAVE YOUR SAY
They have my every good wish. I'm sure she's in safe hands.
SD, UK
Send us your comments
The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.
The removal of the girl's breast buds was also done in part to avoid sexual abuse, but was carried out primarily so she would not experience discomfort when lying down, the parents said.
The couple emphasised their love for their daughter and said the amount of criticism their choice of treatment attracted had surprised them.
"If the concern has something to do with the girl's dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity," they said.
"The oestrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby."
