7 Healthcast: Disability dilemma
Photos of Ashley were made public on her family's Web site this week, when they decided to tell their side of the story. We don't know her last name or who her family is. But we do know that the nine-year-old suffers from a mysterious illness doctors call static encephalopathy. She can't talk, walk or do anything for herself, and she never will.
So, her parents made the unusual decision to stop her growth. And now, biomedical ethicists around the world are weighing in on what appears to be an unprecedented case.
"Initially I was a little startled," said Dr. Benjamin Wilfond, of Seattle Children's Hospital.
"This is entirely new territory," said Dr. Michael Kalichman, of the University of California San Diego.
Doctors at Seattle's Children's Hospital gave her high doses of estrogen ensured to keep her at 4-foot-5 and about 75 pounds for the rest of her life. And they removed her uterus and breast buds, so she'll never experience menstruation or have a woman's chest. The surgeries were done in 2004, but it wasn't revealed to the public until recently. In their Web site, her parents say they did it for her long-term comfort.
"The parents really had two choices in front of them," Dr. Kalichman said. "One was to keep the child at home if she remained small or to institutionalize the child because they couldn't take care of her anymore."
Many ethicists sympathize with the parents. But some call it a slippery slope that is sure to spark a national debate, much like the case of Terry Schiavo.
"I think each case needs to be looked at very specifically and very individually, so it's very difficult to say what an individual family might decide, depending on the circumstances of the child," Dr. Wilfond said.
Ashley's parents have declined all interview requests. Her doctors said without the treatment, she likely would have grown to 5-foot-6 and weigh 125 pounds.
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