Pillow Angel Ethics

Via Slate's Today's Blogs column, from a Newsweek article of the same title by Nancy Gibbs:

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." 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. For the ethics committee of Seattle Children's Hospital, which reviewed the proposed treatment, "it took time to get past the initial response-'wow, this is bizarre'- and think seriously about the reasons for the parents' request," says Diekema.

The ethics committee essentially did a cost-benefit analysis and concluded that the rewards outweighed the risks. Keeping Ashley smaller and more portable, the doctors argue, has medical as well as emotional benefits: more movement means better circulation, digestion and muscle condition, and fewer sores and infections. "If you're going to be against this," Gunther says, "you have to argue why the benefits are not worth pursuing."

Bizarre is an understatement. The family's blog is here.