"I think most people, when they hear of this, would say this is just plain wrong," Brosco said. "But it is a complicated story, and when you get into this issue, you can understand the difficulties.
That's Miami pediatrician Jeffrey Brosco talking about the case of "Ashley," a nine-year-old girl with static encephalopathy, severe brain damage that leaves her bedridden, unable to roll over or sit up by herself, fed by a tube. Her parents say she hasn't shown material in mental ability since she was three months old. They call her a "Pillow Angel" because she tends to stay where they put her -- and because they love her deeply.
What makes the story complicated is the treatment Ashley's parents designed for her, in consultation with doctors and ethicists at Seattle Children's Hospital and Regional Medical Center. In July 2004, they removed her uterus so she wouldn't mentruate or have cramps; they removed her early breast buds so she wouldn't have fully developed breasts; they administered high dose estrogen therapy to attenuate growth; and they removed her appendix to avoid a potential appendicitis that she wou;dn't be able to tell anyone about. The result is that she will remain 4 ft 4 in tall and about 75 lbs for the rest of her life, making life more comfortable for her and making it easier for her parents to care for her at home.
Ashley's doctors Daniel Gunther and Douglas Diekema broke the story in an article in the AMA journal Archives of Pediatric and Adolescent Medicine titled Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma. In the same issue, an editorial by Dr, Jeffrey Brosco (quoted above) and Dr. Chris Freudtner explored the ethical dilemma and asked four questions: Will it work? Is it unacceptably unnatural? Could it be misused? And -- tellingly -- does it detract from the argument for more spending on home health care?
An on-line Reuters story and MSNBC message board ignited the debate, and yesterday a syndicated LA Times story by Sam Howe Verhovek expanded the discussion on-line, in print and finally on TV (after the g-d pre-roll ad).
Life enhancement innovations like cosmetic neurology, 20-15 LASIK, non-therapeutic abortion, body modification and other elective surgeries are an inevitable part of medical care in a free society. Enhancing the life of your child should be included in that list. Ashley's parents have published a heart rending anonymous blog of supreme, clear-eyed love and honesty called The Ashley Treatment. They describe how they came to the decision, explain the details in-depth, and try to cope with some of the knee-jerk vilification they've received since the story got out. To them, it was an easy decision: they wanted their daughter to be happy. In the process, they've advanced an important discussion in healthcare immeasurably.