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Treatment keeps girl child-sized Treatment keeps girl child-sized
(about 1 hour later)
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.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.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.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.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.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.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.
"Dad is frequently the one that lifts her from one place to the other, so if she gets bigger that becomes much more difficult, as they get older it becomes more difficult. At that point in time they would be forced to consider using a mechanical lift, which is much more impersonal."
'Improve her life''Improve her life'
"A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver," Ashley's parents wrote on the site. Ashley's parents wrote on the site: "A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver.
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 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."
"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.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.The couple decided three years ago to take steps to minimise their daughter's adult height and weight.
They authorised doctors to remove her uterus to prevent menstruation and to limit her breast growth through the removal of breast buds so that she would not experience discomfort when lying down. 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%.
The surgery was performed in July 2004, and shortly after that Ashley began hormone treatment that is expected to reduce her untreated height by 20% and weight by 40%. Abuse fears
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. Ashley's parents said the decision to remove their daughter's uterus and breast buds was for the girl's comfort and safety.
Ethics row "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.
They emphasised their love for their daughter and said that the amount of criticism their choice of treatment attracted had surprised them. The operation also removed the possibility of pregnancy if Ashley were ever the victim of sexual abuse, they said.
"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." 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.""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."
The BBC's Laura Trevelyan says the case has triggered an ethical row in the US about the limits of medical intervention.
When details of the case were published last year, it drew angry reactions from some people and the couple were accused of "Frankenstein-esque" behaviour.
Douglas Diekema from the University of Washington in Seattle was on the ethics committee that gave the go-ahead for Ashley's treatment.
"We said yes because the parents convinced us it was in fact in this little girl's best interests," he told the BBC.
Were the parents right to do this to their daughter? Should this type of decision rest solely on one hospital's ethics committee, or should more people have been consulted? Should this type of treatment be more widely used?Were the parents right to do this to their daughter? Should this type of decision rest solely on one hospital's ethics committee, or should more people have been consulted? Should this type of treatment be more widely used?
Comments posted here are to be used by the BBC World Service radio programme World Have Your Say for their broadcast at 1800 GMT. As a result no comments will appear on this story Comments posted here are to be used by the BBC World Service radio programme World Have Your Say for their broadcast at 1800 GMT. As a result no comments will appear on this story
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