2008 Woodie Awards
Treatment denies girl dignity, rights
Matthew Adair
Issue date: 1/22/07 Section: Opinions
Raising children with disabilities is never easy, but for most families, giving more of themselves than they ever expected to is a small price to pay for knowing that their child will live as fulfilling a life as is possible. For one family, however, caring for their child has gone far outside the realm of what most of us would think of doing.
Ashley, age 9, whose surname has not been disclosed to the media, has a condition called static encephalopathy - a type of severe brain damage that leaves the brain permanently at a younger level of functioning. Regardless of her age, Ashley will always have the mental capacity of an infant. She is conscious and alert, but cannot walk, talk or manipulate objects.
This state prompted her parents to ask for drastic medical measures, which they refer to as the "Ashley treatment." In 2004, Ashley was given a hysterectomy and had her breast tissue removed. She also received estrogen hormone treatment to slow her growth, which continued until recently, after her parents deemed the treatment a success. Ashley is now 4-foot-5-inches and weighs 75 pounds as a result of the procedure, stunting her height by about a foot and her weight by around 50 pounds.
Ashley's parents had to argue the case for the "Ashley treatment" to a panel of medical ethicists, who agreed that the procedures were in the young girl's best interests, that the parents concerns that an older, taller, heavier daughter would be more difficult for them to properly care for were reasonable and that it was better to spare Ashley the physical discomfort of puberty as she is mentally incapable of understanding what she is going through.
Her family also has a history of breast cancer, and it was felt that removing Ashley's breasts before they developed would spare her from developing or having to go through treatment for that disease.
With so many concerns, it is easy to think that Ashley's parents are acting out of love and doing the right thing for their child. Caring for children with such severe disabilities is an immense responsibility and can place a great deal of strain on the family as everyone rearranges their lives to accommodate a family member that is unable to care for themselves.
Ashley, age 9, whose surname has not been disclosed to the media, has a condition called static encephalopathy - a type of severe brain damage that leaves the brain permanently at a younger level of functioning. Regardless of her age, Ashley will always have the mental capacity of an infant. She is conscious and alert, but cannot walk, talk or manipulate objects.
This state prompted her parents to ask for drastic medical measures, which they refer to as the "Ashley treatment." In 2004, Ashley was given a hysterectomy and had her breast tissue removed. She also received estrogen hormone treatment to slow her growth, which continued until recently, after her parents deemed the treatment a success. Ashley is now 4-foot-5-inches and weighs 75 pounds as a result of the procedure, stunting her height by about a foot and her weight by around 50 pounds.
Ashley's parents had to argue the case for the "Ashley treatment" to a panel of medical ethicists, who agreed that the procedures were in the young girl's best interests, that the parents concerns that an older, taller, heavier daughter would be more difficult for them to properly care for were reasonable and that it was better to spare Ashley the physical discomfort of puberty as she is mentally incapable of understanding what she is going through.
Her family also has a history of breast cancer, and it was felt that removing Ashley's breasts before they developed would spare her from developing or having to go through treatment for that disease.
With so many concerns, it is easy to think that Ashley's parents are acting out of love and doing the right thing for their child. Caring for children with such severe disabilities is an immense responsibility and can place a great deal of strain on the family as everyone rearranges their lives to accommodate a family member that is unable to care for themselves.
Viewing Comments 1 - 2 of 2
james
posted 1/22/07 @ 12:37 PM CST
I think Ashley's parents probably acted reasonably and that she will likely never percieve that any such treatment has taken place. She will probably have a slightly less traumatic life and be able to live in the care of people who care more for her than any nursing home staff ever could. (Continued…)
Anonymous2000
Anonymous
posted 1/22/07 @ 12:48 PM CST
Well written article, but from the tone it's doubtful that the author has ever had the responsiblity of caring for a debilitated person. If he had, he would know that thinking up more clever ways to care for the person just doesn't cut it when you're exhausted and at your wit's end and there are no more programs to access and no more funds to use. (Continued…)
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