The story of Ashley the “Pillow Angel” is like something out of a David Cronenberg movie. She is nine years old, and due to a medical procedure performed at the behest of her parents, she will remain in a state of preadolescence.
She was born with a condition known as static encephalopathy, which is a form of severe brain damage. She cannot communicate or eat or sit up. She lies on a pillow, free from the world, existing in a near-catatonic state.
It’s hard to imagine a 9-year-old girl undergoing a hysterectomy, a mastectomy, and then being pumped full of estrogen, all to halt her growth. But that is exactly what her parents did. Currently, she weighs approximately 65 pounds and is 4 feet 5 inches tall.
The story has received coverage from around the world. The headline in the London Telegraph reads “Ashley the pillow angel: love or madness?” Some have likened Ashley’s plight to Terri Schiavo’s, the brain damaged Floridian whose tragic life came to an end amidst popping flash bulbs, pompous media buffoonery and politically unscrupulous grandstanding. But Ashley is different because she is a child and because she has never exhibited cognizance.
The issue is complicated because it concerns human choice. Ashley clearly can’t make decisions for herself. Her parents can. They profess to love her; they profess to want what is best for her. All anyone can do is take their word for it..
The story came to light in October, when Archives of Pediatrics & Adolescent Medicine, a medical journal, detailed the operation. The procedure received minor notices in the press. You would think the anonymity would be good for the family. Strangely, Ashley’s family seems complicit in seeking publicity. Her father, a computer programmer, runs a blog titled “The ‘Ashley Treatment,’” on which he proudly declares, “We are getting more emails and requests than we can possibly handle – more than 1500 in the 48 hrs since the LA Times story broke out.”
Perhaps her parents believe that their outspokenness will normalize their daughter’s procedure. Perhaps her parents want to speak before the cacophonic rabble amass to voice their dissent. Perhaps her parents think they are doing the right thing. Perhaps. Regardless, the demonstrable remonstrance directed at Ashley’s parents exists on a very narrow spectrum; people have called the procedure, and by proxy the parents, “Frankenstein-esque” and “grotesque.” The debate has lacked nuance. The blog only fuels the lurid, sideshow aspects of Ashley’s life. Its goal may be to humanize her, but it also allows others to use her as political or moralistic capital.
The situation is striking because it exists in the gray area between “morality” and “ethics” – between personal beliefs and professional dictums. “This particular treatment, even if it’s OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities. … As a society, we do a pretty rotten job of helping caregivers provide what’s necessary for these patients,” said Dr. Joel Frader, a medical ethicist at Children’s Memorial Hospital in Chicago. But societies don’t care for people with disabilities, individuals do. If an individual caregiver – a parent – chooses a medical procedure to make it easier to do a good job of caring for his or her child, is this a bad thing?
An editorial in the journal said the procedure was ill-advised because it might not work, and Art Caplan, a medical ethicist at the University of Pennsylvania, argues that medical procedures that do not directly benefit patients seem wrong. But Ashley’s parents say that they see results; they also argue that by keeping her in a state of suspended growth, she will not go through the discomfort of menstrual cycles and her small stature will reduce the risk of bedsores.
But many people will continue to believe that Ashley’s parents performed the operation for their own benefit. Of course they did. But as caregivers, their needs deserve recognition, too. If the procedure works and Ashley leads a happier life as an age-stunted “pillow angel,” what remonstrance can one have?
Detached from context, the situation seems inhumane. That was my first reaction, too. Situations like this elicit a gut-level response; we focus on the sordid details and exclude the reasoning. However, if this procedure jibes with Ashley’s parents’ personal morality and her doctor’s ethical considerations, then they did the right thing.
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