Child's hysterectomy illegal, hospital agrees

Children's Hospital's admission Tuesday that it was illegal to give a hysterectomy to a physically and mentally disabled 6-year-old girl without a court order is not likely to end the ethics controversy that has raged around the case.

But it might end up curtailing similar interventions in the future, because disability-rights advocates have vowed to take their fight to hospitals across the country.

At the same time, the parents of Ashley, now 9, are standing by their decisions to stunt the growth of their "Pillow Angel," who can't sit up, feed herself, talk or hold a toy on her own. They fear the latest turn might put "an onerous burden on already overburdened families" of severely disabled children.

The announcement Tuesday came after months of worldwide controversy over the 2004 decision to use a series of interventions to halt the girl's growth because severe brain damage had left Ashley with the physical and mental abilities of a 3-month-old. Doctors gave her high doses of hormones, performed surgery to stop her breasts from developing and removed her uterus.

The case became public earlier this year, when her parents, who live in the Seattle area and have remained anonymous, created a blog to explain their care of their daughter.

They wrote that the operations made Ashley more comfortable and less susceptible to health problems associated with being bedridden. A smaller body would be "more appropriate and provide her more dignity and integrity than a fully grown female body," they wrote.

Information

The site maintained by Ashley's parents: http://ashleytreatment.spaces.live.com

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

Earlier this year, a federally mandated watchdog group, Washington Protection and Advocacy System (WPAS), began an investigation. Tuesday it released a report in a joint announcement with Children's saying that Ashley's constitutional and legal rights were violated.

Although Washington has no specific law forbidding such procedures, Children's agreed that the state Supreme Court has held that a court order is required to sterilize a child with developmental disabilities. In another case, an appeals court found that such a child must have an independent, zealous advocate.

Children's has now promised to develop policies to require court orders and to wait until all appeals are exhausted before performing hysterectomies or any growth-limiting medical interventions on children with developmental disabilities.

The hospital also will appoint a person with a "disability-rights perspective" to its ethics committee.

Dr. David Fisher, Children's chief medical officer, said Tuesday that the hospital took full responsibility for the error. He said it was the result of an "internal miscommunication which resulted in violation of the law."

In considering whether to permit the operations in 2004, the hospital's ethics committee had concluded a court review was required, Fisher said. But an attorney for Ashley's parents had advised them that because the primary purpose was not to sterilize Ashley but to prevent other medical complications, no court order was required. The surgery went ahead.

"This is where our system broke down," Fisher said. "We understand there is disagreement about our conclusions. This disagreement should have been brought before a judge."

Still, Fisher said he believes the hospital did the right thing. "We believe we acted in Ashley's best interest," he said.

On the other side, Curtis Decker, executive director of the National Disability Rights Network, of which WPAS is a member, countered that his organization saw no circumstances in which such procedures should be done on patients with disabilities.

Medical approval of such procedures is simply a "gloss of professionalism" covering up an "underlying fear of disability," Decker said after the announcement.

"It's like a mink coat over dirty underwear," he said.

He alluded to historical instances of forced sterilization and killings of disabled people, and he discounted the parents' explanation that the procedures made Ashley more comfortable. He noted that in the past, mental institutions would remove patients' teeth because performing dentistry on them was painful and difficult.

"I think we're very concerned about a slippery slope," Decker said. He said disability-rights advocates will fight efforts to obtain court orders, and they hope to spread safeguards to other hospitals around the country.

"This is not acceptable treatment for a child with a disability," he said.

On the other hand, Dr. Doug Diekema of Children's, the primary ethics consultant on Ashley's case and one of the authors of the medical-journal article, said he has heard from dozens of families of disabled children who support Ashley's parents.

He said he hopes whoever becomes the representative of the disabilities-rights community to the Children's ethics committee will attend with an open mind.

"Ethics committes are not for people with political agendas," he said.

At the same time, Diekema predicted that the legal costs involved in seeking such procedures would probably preclude most parents from pursuing them.

Amid it all, Ashley's parents maintained their anonymity and declined direct interviews.

Early Tuesday, they updated their blog to complain that current law doesn't distinguish between people who might someday become capable of independent decision-making and people like Ashley, whose grave and unchanging medical condition means she will never be capable of it, they wrote.

"As responsible and loving parents, deeply concerned for the well-being of our child, we provided a better quality of life to our Ashley, who is doing very well under our love and care," they continued.

"We hope that other families of the many children like Ashley will likewise be able to care for and benefit their children without undue obstacles."

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