Friday, January 05, 2007
Stunting growth - in whose best interest?
The first time I saw a picture of Ashley, I could understand why her parents call her their "pillow angel." Her beautiful smile is engaging; her sparkling eyes, unforgettable. In many ways, she reminded me of my four little girls. But Ashley can't walk or talk. She can't keep her head up, sit by herself, roll or change her sleeping position, or even hold a toy. Basically, she is a baby inside a 9-year-old's body. Doctors say she suffers from something called "static encephalopathy of unknown etiology," which means she had an insult to the brain of unknown origin or cause. She will never get better. And now she's become the focus of an international controversy.
Ashley has the needs of a baby and always will. At 65 pounds, her parents can still carry her around and involve her in family activities, giving her "needed comfort, closeness, security, and love," as they've written in their blog. But what would happen if she got bigger? That's what her parents worried about, and so after long discussions, Ashley's parents, in consultation with her doctors and ethicists at Seattle's Children's Hospital, decided to stunt her growth by giving her estrogen therapy. "As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently," they write. In addition, a surgeon removed her breast buds and uterus so she won't develop breasts or menstruate. "Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a small, lighter body that is better suited to constant lying down and is easier to be moved around," her parents wrote, adding that since she looked like a girl, she'd be less of a target for sexual predators.
As you can imagine, this treatment has been very controversial. Art Caplan, an ethicist at the University of Pennsylvania, thinks what Ashley's parents have done is "morally wrong...permanently freezing a person into childhood as a solution is not the right answer." Caplan told me that Ashley has the right to grow up and not to be seen an "oddity" or a "freak." Although many comments on web sites are supportive of Ashley's parents, many have also been quite critical, some even saying the parents are practicing "eugenics." What do you think? What would you do if Ashley were your daughter?
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