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 the Archives of Pediatrics & Adolescent Medicine. The medical journal first published the Washington state case in October. 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 that her agency does not believe it was a research case and thus has no authority to investigate.
The case has prompted an outcry since the bedridden girl’s parents disclosed details of the treatment on a blog (ashleytreatment.spaces.live.com) last week.
The 9-year-old 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 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 “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, medical director of Children’s Hospital and Regional Medical Center in Seattle, said the hospital firmly believes it acted in her best interest.
