Four sets of parents want a "Pillow Angel"
www.chinaview.cn 2007-01-08 16:34:06

    BEIJING, Jan. 8 (Xinhuanet) -- The Seattle doctor who treated the severely disabled girl Ashley with surgery and hormones to keep her the size of a six-year-old child has received requests from parents of other disabled children to repeat the treatment.

    Dan Gunther, associate professor of pediatrics at the University of Washington, devised Ashley's treatment with the blessing of her parents. He said since the story was posted online by the mother and father of the "Pillow Angel," four sets of parents had contacted him to ask that their children be considered.

    "There are many families who are in the same position as Ashley and her parents and for whom this might be an option. We certainly wouldn't want to put pressure on families, but there are some where children would undoubtedly benefit," Dr Gunther said.

    But the question that has heated up Internet blogs and message boards is what manner of doctor 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 treatment given to Ashley, now aged nine, who has been brain damaged since birth and cannot walk or talk, became public last week when her parents posted a 4,000-word essay on the internet explaining why they had wanted to subject her to a series of operations including removal of her uterus, breasts, and to a high-dose course of the female hormone oestrogen to halt bone growth.

    Gunther and Dr. Douglas Diekema, who first published the details of "The Ashley Case" in the Archives of Pediatric and Adolescent Medicine, feel many of their critics don't understand the nature of this case.

    They said by restricting Ashley's size to 4'5" (1.34 metres), rather than her expected 5'6"in, she would be more comfortable and have a better quality of life.

    "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 decided the rewards outweighed the risks. The doctors argue keeping Ashley smaller and easier to care for 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."

    Gunther also understands why the case has inspired such intense feelings -- but said that "visceral reactions are not an argument for or against."

    "This was not a girl who was ever going to grow up," he said, "she was only going to grow bigger. 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?" he asked. "Ashley will always have the mind of an infant, and now she will be able to stay where she belongs -- in the arms of the family that loves her."

    "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 how far would Gunther and Diekema take this argument? Would they agree to amputate a child's legs to keep her lighter and more portable?

    Hormone treatment is not nearly as risky and disfiguring as amputation, Diekema retorts; it just accelerates a natural process by which the body stops growing. Parents of short children give them growth hormones for social more than medical reasons, he said. How can it be O.K. to make someone "unnaturally" taller but not smaller?

    To warnings of a slippery slope, Gunther tilts the logic the other way: "The argument that a beneficial treatment should not be used because it might be misused is itself a slippery slope," he explains. "If we did not use therapies available because they could be misused, we'd be practicing very little medicine."

    (Agencies)

Editor: Gareth Dodd
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