Pillow Angel Ethics

Thursday, Jan. 11, 2007 By NANCY GIBBS

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What kind of doctors would agree to shorten and sterilize a disabled 6-year-old girl to make it easier for her parents to take care of her? Dr. Daniel Gunther and Dr. Douglas Diekema, who revealed the details of the Ashley Treatment in the Archives of Pediatric & Adolescent Medicine, were intent on improving the life of the child whose parents call her their "pillow angel"; they think their critics don't understand the extreme nature of this case. The critics, especially advocates for the disabled, think the doctors don't understand the true cost of what they have done. Talk to all sides, and you confront every modern challenge in weighing what medicine can do vs. what it should.

The case: Ashley, now 9, is a severely brain-damaged girl whose parents feared that as she got bigger, it would be much harder to care for her the way they wanted to. 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 about 13 in., to 4 ft. 5 in. "Ashley's smaller and lighter size," her parents write on the blog defending their decision, "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 goal was "to improve our daughter's quality of life and not to convenience her caregivers."

But the treatment went further: doctors removed Ashley's uterus--to prevent potential discomfort from menstrual cramps and pregnancy in the event of rape--and her breast buds because of a family history of cancer and fibrocystic disease. "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" since the harness straps that hold her upright go across her chest.

The parents say that the decision to proceed was not a hard one for them--but the same cannot be said about the doctors. For the 40-member ethics committee of Seattle Children's Hospital, "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, who chairs the bioethics committee of the American Academy of Pediatrics and was brought in to consult on this case.

Keeping Ashley smaller, the doctors argue, has medical as well as emotional benefits: making it easier for her to be moved around means better circulation, digestion and muscle condition and fewer sores and infections. Her parents could continue to lift and bathe and dress her without assistance. "If you're going to be against this," Gunther says, "you have to argue why the benefits are not worth pursuing." Looking back on the committee debate now, both doctors admit there was an instinctive, emotional ingredient in the decision to proceed. "I think in the end it was the obvious bond and love that exists between Ashley and her parents that convinced them this was the right thing to do," Gunther says.