I read some more. I don't know what I'd have done if my daughter had this illness. They didn't find out right away, so they were bonded to the child.
I would hope she died. I would wish the situation never came about. But I would never even have conceived of halting her physical development. And I really don't know what I would do.
The Pillow Angel Case--Three Bioethicists Weigh In
We asked three of the country's most esteemed bioethicists to give their professional opinion--was the "Ashley Treatment" a wise decision?
By Christopher Mims
On January 3 of this year the parents of a girl with static encephalopathy, a disorder that leaves her unable to move and with the cognitive capacity of an infant, announced on a blog that they had been using hormones to stunt the growth of their daughter for medical and quality-of-life reasons. [More details are available via the original news report of the story .] The resulting, and very public, debate--much of it carried out in the comment thread of the original blog --has ranged from support for the parents to accusations of eugenics and worse.
In order to cut through the noise, we asked three bioethicists--doctors not unlike those who, as members of a medical ethics board, authorized the treatment in the first place--to relate their professional opinion of the case.
All three bioethicists came down firmly on the side of the parents and the decision of the original ethics board--but with a few reservations. Their discussion ranged from issues of privacy raised by the media frenzy surrounding this case to the question of whether or not this intervention is a technological fix for a social problem.
What follows is an unedited transcript of an e-mail dialogue that took place Friday, January 5, between the following participants:
Joel E. Frader, MD, is division head of general academic pediatrics at the Children's Memorial Hospital,Chicago, Illinois, as well as a professor of pediatrics/medical humanities and bioethics at Northwestern University's Feinberg School of Medicine.
Norman Fost, MD, MPH, is a professor of pediatrics and bioethics as well as director of the program in bioethics and vice chair of the Department of Medical History and Bioethics at the University of Wisconsin Medical School.
Benjamin Wilfond, MD, is director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and a professor at and chief of the Division of Bioethics, Department of Pediatrics, University of Wisconsin Medicine.