In a 2004 photo, a child known only as Ashley is shown. The parents of the severely mentally and physically disabled child have stunted her growth to keep their little ‘‘pillow angel’’ a manageable and more portable size. The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5. AP Photo/ashleytreatment.spaces.live.com/blog
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Recently, the medical journal “Archives of Pediatric and Adolescent Medicine” published “The Ashley Case” about a girl who is brain-damaged. As reported in Time magazine, the girl’s parents, figuring that their “pillow angel” would get harder to care for as she got older and larger, arranged for medical treatments to keep her short. High doses of estrogen for two years reduced her eventual height by approximately 13 inches, to 4 feet 5 inches.
The parents claim on their blog that “Ashley’s smaller and lighter size 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.,” stressing that the purpose of the treatment was “to improve our daughter’s quality of life and not to convenience her caregivers.”
In addition, the doctors removed her uterus to prevent the possibility of pregnancy in the event of rape, and also her breast buds because of a family history of cancer. The parents explain, “Ashley has no need for developed breasts since she will not breast feed, and their presence would only be a source of discomfort to her.”
Doctors wonder whether they did the right thing here, in intentionally shortening and sterilizing a child. Normally, parents or legal guardians make medical decisions for minor children (and incompetent persons generally), but they are supposed to act in the best interests of the child or ward. Parents who do not seek needed medical treatment for a child in their care would be legally and perhaps even criminally liable for the resulting harm.
Ostensibly, the parents claim to have acted in their daughter’s best interest and are careful to couch their decision in terms of her interest rather than theirs -- “improve our daughter’s quality of life” rather than “to convenience her caregivers” (who just happen to be themselves). And certainly the parents of any disabled child deserve our compassion and support in the very real burden they carry. But judge for yourself whether this stunting of their daughter’s normal biological growth and processes is really in their child’s best interest.
Take it from the standpoint of the doctor’s role. Normally, doctors try to cure a patient’s problematic medical condition, and if they can’t cure it they at least provide patient care and alleviate the symptoms, like pain, so that the patient can live as normal a life as possible. Ashley’s underlying medical condition is her brain damage, and the doctors apparently were unable to do anything to heal that problem. Nor are they helping her to live as normal a life as possible under the circumstances by stunting her growth, sterilizing her and removing her breasts.
The Compendium of the Catechism of the Catholic Church calls these procedures “practices contrary to respect for the bodily integrity of the human person” and states rather succinctly that “Mutilations of a person are morally permissible only for strictly therapeutic medical reasons” (n. 477). I take this to mean that it would be proper to remove Ashley’s breasts if and when she developed breast cancer, but not on the mere speculation that she might someday because of a family history of cancer.
Disability rights advocates are particularly disturbed by what happened here. As Time’s Nancy Gibbs reported, “Frequent touch is indeed important; but is it really so much harder to hug someone who is 5’6”, or to bring her to the table at dinnertime?... With the right information and support, disability rights advocates believe, there is no need for a medical solution to an essentially social problem.”
At a time when, in accordance with the “culture of death” mindset of Roe vs. Wade, the lives of infants are routinely sacrificed on the altar of adult convenience, we would perhaps do well to grow in respect for the life and bodily integrity of all human beings without exception. And that includes Ashley.
Dwight Duncan is a professor at Southern New England School of Law. He holds degrees in both civil and canon law.