The whole world has heard about “Ashley,” a nine-year-old girl with Static Encephalopathy, a severe brain impairment that leaves her immobilized. Her parents are deeply committed to her; they call her “Pillow Angel” because she stays right on the pillow where they place her and shines her blessings upon them. Ashley is unable to walk, talk, keep her head up, roll-over, or sit up by herself. She does not speak or eat and is nourished through a feeding-tube.
When Ashley was seven she began to show early signs of puberty, and her parents became concerned that one day their Pillow Angel would become too big for them to lift, move, or take out. Doctors informed them of a treatment known as “growth attenuation” where they could permanently stunt her growth with drugs and surgery.
These parents have their daughter’s best interest at heart. They are motivated only by love and will care for Ashley the rest of their lives. There is no real question that she will be better cared for by her parents than by any long-term care institution, and she will probably live significantly longer because of that care. There is no doubt it would be easier for them to handle her in the future, so they decided to keep her small. All of the doctors and administrators in the Seattle hospital believed they acted in Ashley’s best interest and that she and the family were thriving.
Ashley’s case was reported in the October Archives of Pediatric and Adolescent Medicine. It described the ethical dilemmas, surgical procedures (removal of Ashley’s uterus and breast tissue), and the drugs being used to keep her at 4’5” tall and weighing about 75 lbs. for the rest of her life. The case has caused an outcry — groups from feminists to disabled rights groups are demanding an AMA ethics panel look into the case. I think this public discussion is wonderful and applaud the Seattle doctors for reporting the case.
This is the basic ethical question: Is it acceptable to perform invasive medical procedures on a person with a profound disability because it makes it easier for that person to be cared for? I cast my vote that it’s basically wrong; it can never be ethical to deal with one’s own (or society’s) comfort at somebody else’s expense; we don’t sacrifice others to save ourselves.
This is the new “Sophie’s Choice” of the scientific age. We have the technical capacity to alter the profound impact of nature’s “mistakes.” This is a slippery slope. Modern parents of severely cognitively disabled children (or profoundly physically disabled children) could feel pressured to have their kids undergo such procedures to avoid agonizing future choice about whether to send their fully grown child to an institution.
Ashley might have had breasts, periods, and weighed 120 pounds and her parents would’ve still loved her. They are great parents and would have done the best they could, for as long as they could, no matter what. Ashley would’ve done the best she could, for as long as she could too, and all would have felt blessed. Ashley is a Pillow Angel whose presence on earth teaches us something about compassion, respect, and the awesome power and blessing of love.