Four years after Seattle Children's hospital created a firestorm of controversy by stunting the growth of a profoundly disabled girl, a Seattle-based group studying the ethics of growth attenuation has decided the procedure is "morally permissible" under certain conditions.
The 20-member group, which included doctors, ethicists and parents of disabled children from across the country, published their findings in the current issue of the Hastings Center Report, a prominent bioethics journal.
The group was unable to achieve a consensus on the polarized topic, which is often referred to as the "Ashley treatment," after the 6-year-old girl (pictured) who underwent the procedure at Children's.
Instead, the group reached what it called a "compromise."
Most members said stunting a child's final height is an "ethically acceptable decision" that should only be considered for children who require total care, have an IQ of 25 or less, and have other persistent and profound disabilities.
"The paper was the product of trying to articulate these issues. What hospitals or other groups do with it is up to them," said Benjamin Wilfond, a pediatrics professor at the University of Washington and director of Seattle Children's Center for Pediatric Bioethics.
"We hope we've contributed to the conversation not just about pediatric bioethics, but about children with profound disabilities."
Wilfond said the report was not about Children's case, nor did it represent the hospital's views. Rather, the group had wanted to craft some practical guidance for health professionals.
The Seattle case first came to light in 2006, when the Archives of Pediatric and Adolescent Medicine published an article about 6-year-old Ashley, who had the brain capacity of a 3-month-old. The girl was unable to talk, walk or move on her own.
Her doctors had given her high doses of estrogen to close the growth plates in her bones, which permanently reduced her height from a predicted 5-foot-4 to an estimated 4-foot-6. Her parents had justified the decision as a way to make caring for her easier.
The so-called "Ashley treatment" went beyond growth attenuation; it included the removal of the girl's uterus and breast buds. Her parents had wanted to prevent her from menstruating and protect her from any uterine bleeding from the estrogen.
They worried that she might inherit breast disease that ran in the family, and that the straps of her wheelchair might hurt her breasts. They also worried that visible sexual development would make her susceptible to abuse, a problem among developmentally disabled teens.
But the decision ignited vociferous outrage, mainly among disability rights groups, who said society needs to work harder to accept disabled people "as they are."
Most compelling in the group's report -- which only looked at growth attenuation -- are tales from parents of severely disabled children.
Among them was Sue Swenson, who wrote of the difficulty of caring for her legally blind, quadriplegic, nonverbal, autistic, profoundly intellectually disabled, 6-foot-tall, 190-pound son.
"Just to be clear: he has a good life, friends, and interests. He is loved," said Swenson, of Bethesda, Md. "At twenty-eight, he is no longer a child."
Swenson said there is continuous pressure to "fix" or intervene in disabilities, instead of acceptance. She said growth attenuation should never be used unless it treats an underlying disorder.
"The human rights of the child as a person with disability should limit parental rights," she said.
In contrast, Sandy Walker, of Kent, wrote of her 15-year-old, non-verbal, quadriplegic daughter, whom she said had become harder to diaper, care for and include in family fun as she's grown. She said trips to the beach or simply up a flight of stairs had become increasingly challenging, and the resources for disabled people are often inadequate, out-of-reach or impractical.
"The 'Ashley Treatment' was not a last-ditch effort borne of desperation and despair," Walker wrote. "It was a creative solution borne of a deep-seated love for a child whose opportunities for familial and social interaction are already limited by size and mobility issues."
Wednesday, December 1, 2010
Seattle Children's Hospital that stunted growth of Ashley X reacts to ethics center decision that treatment is "morally permissible"
The Seattle Post-Intelligencer:
Posted by BA Haller at 6:02 PM