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 that the treatment was essentially a medical experiment and that a hospital institutional review board should have been consulted beforehand.
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 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, about a foot shorter than the adult height she probably would have reached, her parents say.
Ashley suffered brain damage from an undetermined cause that was diagnosed shortly after birth, leaving her in an infantile 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.
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 interest.
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 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.
Amber Smock of Feminist Response in Disability Activism said the AMA sanctioned Ashley's treatment by allowing the report to be published. The journal is owned by AMA but has an independent editorial board.
The AMA issued a statement saying it "does not have policy pertaining to the medical treatment referred to as the 'Ashley treatment."' It also said that under the AMA's ethics code, medical decisions about incapacitated patients should be based "on the best interest principle."
About 25 protesters, some in wheelchairs, demonstrated outside the AMA's Chicago headquarters Thursday, chanting, "Accommodations, not operations."
"As far as I'm concerned, it was mutilation," said Donna Harnett, 42, who brought her brain-damaged 10-year-old son, Martin, to the protest.
Dr. Frederick Rivara, the journal's editor, said he published the case not out of support or opposition, but to bring it to doctors' attention "and to have exactly this kind of discussion in the scientific community about is this the right thing to do or not."
Ashley's parents have not been identified and have declined media requests for interviews.