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Activists Condemn Surgery To Stunt Disabled Girl's Growth
AMA Says Journal Article Presented Both Sides
POSTED: 5:33 pm CST January 11,
2007
UPDATED: 9:19 am CST January 12,
2007
CHICAGO -- Activists are demanding an investigation into treatment performed on a severely brain-damaged girl whose growth was deliberately stunted to make it easier for her parents to care for her at home.
Critics want an official condemnation from the American Medical Association, which owns a medical journal that first published the Washington state case. They also want state and federal officials to investigate whether doctors violated the girl's rights.
"It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for," said Steven Taylor, director of Syracuse University's Center on Human Policy.
Taylor said the treatment was essentially a medical experiment and that a hospital institutional review board should have been consulted beforehand.
The girl, identified only as Ashley, had surgery in 2004 to remove her uterus and breast tissue at a Seattle hospital and received growth-stunting hormones. She is now 4 feet 5 inches, about a foot shorter than the adult height she probably would have reached, her parents say.
NBC5's Lauren Jiggetts reported that protestors outside of the AMA's headquarters in Chicago on Thursday said the doctors violated the girl's rights, and said more services and resources were needed for the disabled.
Donna Harnett, 42, a legal researcher from Chicago, brought her brain damaged 10-year-old son, Martin, to the protest. The brown-haired boy, bundled up in blankets on a stretcher, is nearly as disabled as Ashley, Harnett said. But she said she'd never consider surgery to keep him small.
"As far as I'm concerned it was mutilation," Harnett said. "It was destroying a human being's body" and the AMA should "call it what it is."
Jiggetts reported that protestors demanded that the AMA condemn the procedure, but AMA officials said their journals do not reflect the policy or opinion of the organization. They said the article and editorial in the Journal presented both sides of the issue.
Complaints have been filed with the federal Office for Human Research Protections. But Kristina Borror, a director at the office, said Thursday her agency does not believe it was a research case and thus has no authority to investigate.
The case has prompted an outcry nationwide and abroad since the bedridden girl's parents disclosed details of the treatment on a blog last week.
"The parents really saw two choices in front of them," said Dr. Michael Kalichman of the University of California -- San Diego. "One was to keep their child at home if she remained small. The other is to have the child hospitalized or institutionalized because they couldn't take care of her anymore."
Ashley suffered brain damage from an undetermined cause diagnosed shortly after birth, leaving her in an infant state. She cannot sit up, walk or speak. Her parents say keeping their little "pillow angel" small will allow them to continue caring for her at home even when she is an adult.
Her treatment also will allow her to avoid menstruation and related discomfort, as well as breast cancer, which runs in the family, her parents say.
The girl's doctors at Children's Hospital and Regional Medical Center in Seattle described the case in October's Archives of Pediatrics & Adolescent Medicine.
Dr. Richard Molteni, the hospital's medical director, said there was no need to consult an institutional review board because Ashley's case was not an experiment. He said the hospital firmly believes it acted in her best interests.
The decision to proceed was "thoroughly reviewed by a wide range of medical and surgical specialists, including neurologists, development specialists and ethicists," Molteni said.
The Washington state attorney general's office said it is evaluating a complaint from a New Jersey disabled-rights activist. The state has no laws prohibiting forced sterilization.
Feminist and disabled-rights groups are also are demanding an AMA ethics committee look into the case.
"This is an issue of basically subjecting a child to drastic physical alterations to fit the convenience of her caregivers," said Stephen Drake of the suburban Chicago-based disabled rights group Not Dead Yet.
About 25 protesters, some in wheelchairs, demonstrated outside the AMA's Chicago headquarters Thursday, chanting "Accommodations, not operations." One carried a sign saying, "Let Disabled Children Grow; another sign said, "Ashley's a person, not a pillow."
Ashley's parents have not been identified and have declined media requests for interviews.
Critics want an official condemnation from the American Medical Association, which owns a medical journal that first published the Washington state case. They also want state and federal officials to investigate whether doctors violated the girl's rights.
"It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for," said Steven Taylor, director of Syracuse University's Center on Human Policy.
Taylor said the treatment was essentially a medical experiment and that a hospital institutional review board should have been consulted beforehand.
The girl, identified only as Ashley, had surgery in 2004 to remove her uterus and breast tissue at a Seattle hospital and received growth-stunting hormones. She is now 4 feet 5 inches, about a foot shorter than the adult height she probably would have reached, her parents say.
NBC5's Lauren Jiggetts reported that protestors outside of the AMA's headquarters in Chicago on Thursday said the doctors violated the girl's rights, and said more services and resources were needed for the disabled.
Donna Harnett, 42, a legal researcher from Chicago, brought her brain damaged 10-year-old son, Martin, to the protest. The brown-haired boy, bundled up in blankets on a stretcher, is nearly as disabled as Ashley, Harnett said. But she said she'd never consider surgery to keep him small.
"As far as I'm concerned it was mutilation," Harnett said. "It was destroying a human being's body" and the AMA should "call it what it is."
Jiggetts reported that protestors demanded that the AMA condemn the procedure, but AMA officials said their journals do not reflect the policy or opinion of the organization. They said the article and editorial in the Journal presented both sides of the issue.
Complaints have been filed with the federal Office for Human Research Protections. But Kristina Borror, a director at the office, said Thursday her agency does not believe it was a research case and thus has no authority to investigate.
The case has prompted an outcry nationwide and abroad since the bedridden girl's parents disclosed details of the treatment on a blog last week.
"The parents really saw two choices in front of them," said Dr. Michael Kalichman of the University of California -- San Diego. "One was to keep their child at home if she remained small. The other is to have the child hospitalized or institutionalized because they couldn't take care of her anymore."
Ashley suffered brain damage from an undetermined cause diagnosed shortly after birth, leaving her in an infant state. She cannot sit up, walk or speak. Her parents say keeping their little "pillow angel" small will allow them to continue caring for her at home even when she is an adult.
Her treatment also will allow her to avoid menstruation and related discomfort, as well as breast cancer, which runs in the family, her parents say.
The girl's doctors at Children's Hospital and Regional Medical Center in Seattle described the case in October's Archives of Pediatrics & Adolescent Medicine.
Dr. Richard Molteni, the hospital's medical director, said there was no need to consult an institutional review board because Ashley's case was not an experiment. He said the hospital firmly believes it acted in her best interests.
The decision to proceed was "thoroughly reviewed by a wide range of medical and surgical specialists, including neurologists, development specialists and ethicists," Molteni said.
The Washington state attorney general's office said it is evaluating a complaint from a New Jersey disabled-rights activist. The state has no laws prohibiting forced sterilization.
Feminist and disabled-rights groups are also are demanding an AMA ethics committee look into the case.
"This is an issue of basically subjecting a child to drastic physical alterations to fit the convenience of her caregivers," said Stephen Drake of the suburban Chicago-based disabled rights group Not Dead Yet.
About 25 protesters, some in wheelchairs, demonstrated outside the AMA's Chicago headquarters Thursday, chanting "Accommodations, not operations." One carried a sign saying, "Let Disabled Children Grow; another sign said, "Ashley's a person, not a pillow."
Ashley's parents have not been identified and have declined media requests for interviews.
Copyright 2007 by NBC5.com The Associated Press contributed to this report. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.









