Children's Hospital says it should have gone to court in case of disabled 6-year-old

Children's Hospital & Regional Medical Center admits it was acting outside the law when its doctors performed a controversial hysterectomy on a severely disabled 6-year-old girl, even though her parents and doctors had concluded the operation was in her best interest.

In response to an investigation by a disability-rights organization, hospital officials now acknowledge they should first have sought court approval for the 2004 surgery on the girl, known publicly only as Ashley.

The hospital says the error was the result of a "communication breakdown."

Hospital officials have announced a news conference this morning, where they are expected to outline an agreement with the patient-rights group, the Washington Protection and Advocacy System (WPAS), to make sure court orders are obtained in similar situations in the future. Officials say the hospital will also take other steps to protect the rights of disabled patients.

Ashley's case has received worldwide attention since earlier this year, when her parents, who live in the Seattle area but have remained anonymous, took to blogging on the Internet to explain their care of their daughter, whom they call "Pillow Angel."

Because of severe brain damage that means she has the physical and mental abilities of a 3-month-old infant, her parents sought a series of interventions to halt the girl's growth. Ultimately, those included the hysterectomy, high doses of hormones to stop her bones from growing and surgery to stop her breasts from developing.

On their blog (ashleytreatment.spaces.live.com/blog), Ashley's parents explained that the operations would make Ashley more comfortable and less susceptible to health problems associated with being bedridden. Her body would be "more appropriate and provide her more dignity and integrity than a fully grown female body."

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Ashley's blog: Ashley's parents have set up a blog to discuss her case: ashleytreatment.spaces.live.com/blog.

The parents' online discussions followed publication of an article on Ashley's case in a medical journal by two Children's Hospital physicians who concluded that such actions were "ethical and feasible," with appropriate safeguards, and should be an option open to parents of such children.

One of those authors, Dr. Doug Diekema, the hospital's primary ethics consultant on the case, said he stands by the decisions.

"Whether legally you needed a court order or not is a totally separate question from whether it was right or not," Diekema said.

On the question of whether Ashley's should undergo a hysterectomy and the other aspects of the "growth attenuation" to keep her physically small, Diekema says: "A very careful ethics committee determined that those procedures would most likely be in her best interests."

Assistant state Attorney General Edward Dee reviewed the case after an unidentified person complained about the treatment. He said in January that Washington has no specific law forbidding the procedures performed on Ashley, but last week he said that state courts have ruled that sterilization of a developmentally disabled person for birth-control purposes requires court approval.

The advocacy group, WPAS, a statewide nonprofit organization, says that without that court order, the surgery violated Ashley's constitutional and common-law rights.

Ashley's parents did not respond to interview requests, but they have written on their Web site that they believed the surgery was legal because Ashley will never be in a situation to choose to become pregnant. The sterilization was a side effect of the surgery, not the primary intent, they said.

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com