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Report: 'Pillow angel' surgery broke law

Story Highlights

• Sterilization of profoundly disabled Washington girl violated law, investigation finds
• "Ashley's treatment" removed girl's uterus, breast buds, at parents' request
• Treatment has raised ethical questions, angered disability advocacy groups
By Amy Burkholder
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NEW YORK (CNN) -- A hospital that performed a controversial procedure that stunted the growth and sexual development of a profoundly disabled child violated Washington state law by sterilizing her, according to an investigative report released Tuesday.

The case has raised medical ethics questions and rankled disability and feminist groups.

The Washington Protection and Advocacy System, a private group vested with federal investigative authority for people with disabilities, found that Seattle Children's Hospital and Regional Medical Center violated the constitutional and common law rights of a girl identified only as Ashley by performing a hysterectomy without a court order from the state.

"Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval," said Mark Stroh, WPAS executive director, in a statement.

Children's Hospital, in acknowledging its error, said that beyond implementing changes to ensure that sterilization of disabled children doesn't happen again without a court order, it will seek court approval for other procedures involved in the controversial growth attenuation therapy.

"We deeply regret that a court order was not obtained," Dr. David Fisher, medical director at Children's Hospital said in a statement. "The parents consulted an attorney and obtained a legal opinion that concluded the treatment was permissible under Washington state law without the need for a court order. This is where our system broke down. We take full responsibility."

Ashley, 9, has a condition called static encephalopathy, which means an unchanging brain injury of unknown origin.

"It was like seeing a baby in a much larger body," said Dr. Douglas Diekema, director of education at Treuman Katz Center for Pediatric Bioethics in Seattle and chairman of the bioethics committee of the American Academy of Pediatrics, who was brought in to consult on this case.

"She would never talk, never walk, and was dependent on her parents to meet all her needs. Her cognitive function was the equivalent of that of an infant, unlikely to ever change." Family members call her their "pillow angel."

Working with pediatric endocrinologist Dr. Daniel Gunther, an ethics panel was convened by the hospital to consider the parents' radical request to keep her small forever, through an experimental growth attenuation therapy. The panel, agreed that the treatment was in the girl's best interest.

In 2004, when Ashley was 6, her uterus and breast buds were removed, and she received a high-dose estrogen therapy. As a result, Ashley was frozen as a child. She attained her full growth at 4 feet 5 inches and 75 pounds, with no reproductive capacity.

Ashley's parents say that compassion, not convenience of care, was their motive.

Writing on their blog, her parents said, "Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc."

In an interview with CNN in January, Diekema said the ethics panel grappled with whether to permit the hysterectomy but ultimately sided with the family's attorney, who insisted the primary goal was not sterilization.

"As far as removing her uterus with a hysterectomy, there are many profoundly disabled children who are traumatized by menstruation," Diekema said. "The family wanted to spare Ashley that drama. Ashley's a little girl who already had experienced being terrified of blood."

The parents, in an updated entry on their blog Tuesday, reiterated that "given Ashley's developmental state and prognosis ... voluntary procreation was not applicable to her case and will never be."

"Sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of it," they wrote, adding that while they support laws protecting against involuntary sterilization, they believe the law is "too broadly based" to "distinguish between people who are or can become capable of decision-making and those who have a grave and unchanging medical condition such as Ashley."

Diekema told CNN the ethics committee recognized that Washington state law was not perfectly clear with regard to whether a court order would be necessary to do the hysterectomy in someone who could not consent to the procedure.

One nationally known ethicist said he believes the hospital erred.

"I absolutely agree this procedure should have been reviewed by a court," said medical bioethicist Arthur Caplan. "There was not enough due process to look out for the young girl's rights, so I think that was a severe failure in deciding to do this procedure."

Some disability rights advocates say they believe the Ashley case sends a clear message about the rights of the disabled.

"The implementation of the 'Ashley treatment' raises serious concerns about the continuing discrimination faced by people with disabilities -- discrimination which is often based in stereotypes about their potential and value as individuals," Stroh said.

Disabilities attorney Stephen Rosenbaum agrees. "I have a lot of compassion for this family. And I'm not here to shoot darts at them," he told CNN's Paula Zahn. "But they should know that Ashley has a right to develop as a human being."

WPAS says it has no plans to take legal action against the hospital.

Doctors involved in the procedure said that Ashley is doing well in her family's care, which suggests to them it was the right thing to do.

Ashley's parents are devoted to her, Diekema said.

"A disabled child can be a big challenge for a family, and this was a family that clearly has devoted their lives to making life as good as possible for their daughter," he said.

Amy Burkholder is a producer with CNN Medical News. Medical correspondent Elizabeth Cohen and senior producer Jennifer Pifer contributed to this report.


Ashley, whose last name has not been made public, is in a permanent infant-like state because of a brain injury.


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