The parents of Ashley, this severely disabled girl, have approved a growth-stunting medical treatment so she will have a child's body for life.
What kind of doctors would agree to intentionally shorten and sterilize a disabled six-year-old girl to make it easier for her parents to take care of her? The question has had message boards steaming for days, but the answers are in no way easy.
The case: Ashley is a brain-damaged girl whose parents feared that as she got bigger, it would be much harder to care for her; so they set out to keep her small. Through high-dose estrogen treatment over the past two years, her growth plates were closed and her prospective height reduced by about 13 inches, to 4'5". "Ashley's smaller and lighter size," her parents write on their
blog "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." They stress that the treatment's goal was "to improve our daughter's quality of life and not to convenience her caregivers."
Dr. Daniel Gunther and Dr. Douglas Diekema, who first revealed the details of "The Ashley Case" in the
Archives of Pediatric and Adolescent Medicine, think that many of their critics don't understand the nature of this case.
But the treatment went further: doctors removed her uterus to prevent potential discomfort from menstrual cramps or pregnancy in the event of rape; and also her breast tissue, because of a family history of cancer and fibrocystic disease. Not having breasts would also make the harness straps that hold her upright more comfortable. "Ashley has no need for developed breasts since she will not breast feed," her parents argue, "and their presence would only be a source of discomfort to her."
The parents say that the decision to proceed with "The Ashley Treatment" was not a hard one for them, but the same cannot be said for the doctors. "This was something people hadn't thought about being a possibility, much less being done," says Diekema, who chairs the bioethics committee of the American Academy of Pediatrics and was brought in to consult on this case.
They knew that the treatment would be controversial, though they did not quite foresee the media storm that would erupt when they decided to publish the case and invite their peers to weigh in. "I felt we were doing the right thing for this little girl—but that didn't keep me from feeling a bit of unease," admits Diekema. "And that's as it should be. Humility is important in a case like this."
"Some disability advocates have suggested that this course of treatment is an abuse of Ashley's ‘rights' and an affront to her ‘dignity.' This is a mystery to me. Is there more dignity in having to hoist a full-grown body in harness and chains from bed to bath to wheelchair? Ashley will always have the mind of an infant, and now she will able to stay where she belongs—in the arms of the family that loves her.The argument that a beneficial treatment should not be used because it might be misused is itself a slippery slope," he says. "If we did not use therapies available because they could be misused, we'd be practicing very little medicine"
I think this treatment should be given approval as it is really difficult to take care of a mentally retarded girl. A lot of useful drugs are being misused then that doesn't mean we have to bann those drugs. In the same way, because of fear of misuse, this therapy should not be stopped as it can really be helpful in number of cases.
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