Operation on Pillow Angel Violated Laws, Says US Advocacy Group

The hospital that sterilized Ashley, the pillow angel, in an attempt to stunt her growth, has violated Washington state laws, says the Washington Protection and Advocacy System (WPAS), a private group vested with federal investigative authority for people with disabilities.

It found that Seattle Children's Hospital and Regional Medical Center violated the constitutional and common law rights of the girl 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.

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

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."

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 updated entry on their blog they 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."

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, they say.

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, Dr. Diekema, a consultant in the entire exercise 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.

Source-Medindia
GPL/B