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.
Her parents decided on a course of treatment for her which has involved hormone doses to limit her growth, as well as uterine and breast surgery.
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.
'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.
"A fundamental and universal misconception about the treatment is that it is intended to convenience the caregiver," Ashley's parents wrote on the site.
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
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
"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.
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.
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%.
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%.
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 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.
Ethics row
Ethics row
They emphasised their love for their daughter and said that the amount of criticism their choice of treatment attracted had surprised them.
They emphasised their love for their daughter and said that 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."
"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 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.
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.
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.
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.
"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?
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