01/22/2007 AT 01:00 AM EST
01/22/2007 AT 01:00 AM EST
The father's plea was heartfelt and most unusual. Stop the physical growth of my developmentally disabled little girl, he asked a panel of doctors, so that we may be better able to care for her as years go by. Strapped in a wheelchair, the daughter, a charming, dark-haired 6-year-old named Ashley, stopped fidgeting and calmly looked toward her dad as he spoke. "There's no question this little girl's world is her family," says a doctor who attended that session. "Any concerns were put to rest by watching them."
Which is one reason the medical staff at Seattle's Children's Hospital agreed to the father's 2004 request, deciding that it was ethical to remove Ashley's uterus and breast buds and begin hormone treatments to stop her growth. Today Ashley is a 9-year-old girl with the mind of a baby, who will never grow into a fully developed woman. Her family, who remain anonymous, initially kept their decision private. But an article published in a medical journal last October brought an outcry of public criticism about their choice and prompted the parents—who have two younger, healthy children, a brother and a sister—to post an impassioned yet reasoned Internet blog on Jan. 2 defending their choice. (The family will only make public comments through the blog.) Some, including families wrestling with the heart-and back-breaking effort of caring for severely disabled full-grown adults, sympathized; critics blasted it as Frankenstein-esque. Says disabilities activist Andy Imparato: "It's unnatural and scary."
Ashley suffers from static encephalopathy (permanent brain damage). Her mental and motor abilities stopped developing at three months, and despite visits to neurologists and other specialists and being given "every known traditional and experimental test," no one could figure out why. Ashley cannot hold her head up, roll over, hold a toy, walk or talk. By the time she was 6½, Ashley showed "signs of early puberty" (pubic hair and breast growth), prompting her mother to seek ways to keep her small. With Dr. Daniel Gunther, a Seattle pediatric endocrinologist, the mother discussed hormone treatment—as well as removing Ashley's uterus to avoid menstruation and cramps and removing breast buds because "they were becoming a source of discomfort," according to the blog. Dr. Gunther took the proposed "Ashley Treatment" to the hospital's ethics committee because it had never been done before. They approved and the procedures began.
For doctors, stopping Ashley's growth presented two issues: Would the novel treatment improve her life? And would it cause harm? She weighs 65 lbs. and is 4'5", about as tall as she is expected to grow. "There was a lot to be gained for this little girl and not much to be lost," says pediatrician Douglas Diekema, who led the ethical review. Still, "this would not be appropriate for most disabled people," he cautions. "I do worry we've opened a Pandora's box."
So do critics, who say the parents' convenience prevailed over Ashley's dignity. "She is being denied the right to develop and grow," argues medical ethicist Arthur Caplan. "She'll become an oddity: the 40-year-old 6-year-old." Some worry that Ashley's story may make parents choose between radical surgery or eventually institutionalizing their children. "We need to be careful not to rely on simple medical fixes," says Miami pediatrician Jeffrey Brosco. "If we supported families better, we would not have to face this choice."
While Ashley's parents caution that this treatment might not be best for other disabled children, they have no regrets. "This is about improving Ashley's quality of life," they write. And since posting their story online, they have received hundreds of e-mails in support, making them "feel like heroes."