Ashley Will Never Grow Up--On Purpose
I took a break after cooking dinner (a rarity my daughter often points out) and came downstairs to read the Guardian UK on the 'net. A story about how a family chemically caused their paralyzed 9-year old daughter to stop growing up caught my eye.
"The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.
Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in, rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb rather than 125lb.
This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth.
She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmental level since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children's hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.
Debate has raged among doctors and medical ethicists. Jeffrey Brosco of Miami University has co-written an editorial in the Archives of Pediatrics & Adolescent Medicine criticising the procedure as an experiment without proper research controls. "This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families, but what we need most is better federal funding so that they can be cared for properly."
The ethical row is likely to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment, though only after monitoring by the hospital's ethics committee.
Ashley cannot say what she thinks. But in a telephone interview with the Guardian last night, her father said that many people had assumed he and his wife had to agonise over their decision.
"We didn't. It was easy," he said. "We clearly saw the benefits to Ashley's quality of life. We have also been criticised for harming Ashley's dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old."
"The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.
Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in, rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb rather than 125lb.
This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth.
She was diagnosed, they explain, with brain damage with unknown causes just after birth and has remained at the same developmental level since about three months. Three years ago she began to show early signs of puberty, and they grew anxious about the impact of fertility and of her rapidly increasing size and weight on the quality of her life. In discussions with doctors at Seattle Children's hospital they devised the treatment: removal of Ashley's uterus to prevent fertility, excision of early buds on her chest so that she would not develop breasts, and medication with high doses of oestrogen to limit her growth by prematurely fusing the growth plates of her bones.
Debate has raged among doctors and medical ethicists. Jeffrey Brosco of Miami University has co-written an editorial in the Archives of Pediatrics & Adolescent Medicine criticising the procedure as an experiment without proper research controls. "This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families, but what we need most is better federal funding so that they can be cared for properly."
The ethical row is likely to deepen as the Seattle doctors, led by Daniel Gunther, say they are considering other children for similar treatment, though only after monitoring by the hospital's ethics committee.
Ashley cannot say what she thinks. But in a telephone interview with the Guardian last night, her father said that many people had assumed he and his wife had to agonise over their decision.
"We didn't. It was easy," he said. "We clearly saw the benefits to Ashley's quality of life. We have also been criticised for harming Ashley's dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old."
posted by Max Hartshorne at 6:44 PM
0 Comments:
Post a Comment
<< Home