Ochazuke
A Wish of ‘Pillow Angel’
By Nao Gunji
Saturday, Jan. 20, 2007

In the German movie “Wings of Desire,” an angel attempts to be a human to meet the woman whom he has fallen in love with. He loses his immortality by becoming a human, but acquires the five senses—touch, sound, sight, smell, and taste. Having “assembled, testified, and preserved” the reality of human lives for thousands of years, the angel could no longer remain an observer. To him, being imperfect is precious. Feeling pain and not always knowing the right answers make humans more interesting and most of all, beautiful. 

Nine-year-old Ashley has been at the center of controversy for the past few weeks. Nicknamed by her parents as “Pillow Angel,” Ashley suffers static encephalopathy, a severe brain impairment. She can’t walk, she can’t talk. She can’t even roll over to change her sleeping position and she needs to be fed. She is considered to have the intelligence of a three-month-old baby. Although her body could develop normally and was expected to attain a regular adult height and weight, neurologists, geneticists and other specialists have agreed that her mental and motor conditions won’t improve. 

In early 2004 when Ashley was 6 years old, her parents and doctors at Seattle Children’s Hospital and Regional Medical Center decided to have her undergo a treatment called “growth attenuation,” which keeps Ashley child size, 4 feet 5 inches and 75 pounds, for the rest of her life. It involved a hysterectomy, surgery to prevent breast growth and subsequent high doses of estrogen. The parents’ web site (http://ashleytreatment.spaces.live.com/) indicates that Ashley is now 4 feet 5 inches and has a bone age of 15 years, which implies that she is about 99 percent of her maximum height.     

This rather unusual medical procedure got the public’s attention when her doctor, Daniel Gunther, a pediatric endocrinologist at the Seattle hospital, published a report in a national pediatric journal last October: “the parents particularly feared that continued growth eventually would make it untenable for them to care for their daughter at home, despite their strong desire to do so.” Ashley’s story was spread furthermore when the Los Angeles Times ran an article on her this month. 

Unidentified by the media, Ashley’s parents explained on the web site that the procedure was done on the child not because it would make it more convenient for them to care for Ashley in the future, but because it would make her teen and adult life more social and meaningful. They stated that Ashley is now close to the weight limit which caretakers, including her grandmothers, can lift her without much difficulty. That enables them to bathe her in a tub and take her out to school, backyard or family gatherings. Also, not having large breasts or periods will eliminate unnecessary discomfort, which she won’t be able to understand. 

Her father told The Times, “People think it must have been a horribly difficult decision” to have the treatment performed, but “it really wasn’t.” Since Ashley’s story was told publicly, the parents have received an overwhelming spectrum of reaction, both support and criticism, that the treatment is a violation of human dignity, despite their position that “it will allow Ashley to receive more care, more interaction with her younger brother and sister, and more of the loving touch of parents and others who carry her.” “Eugenics,” “slippery slope,” “despicable” and “Frankenstein-esque” are some of the blogs contributed by the public to the web site.   Under Dr. Gunther’s guidance, the parents presented their case to the hospital’s ethics committee in May 2004. The 40-person committee acknowledged that Ashley is severely impaired with no indications of improvement in her intellectual development and decided to support the parents’ right to seek growth attenuation.

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However, many in the medical field have expressed their concerns that if the growth attenuation becomes more widely available, parents of severely cognitively disabled children might feel pressured to have their children undergo it to avoid the agonizing decision of whether to put them in a special-care facility once they are grown.

It may be a cliché, but our never-ending thirst for exploring further scientific possibilities has made our life not only easier, but also very complicated. Choices, which used to be reserved only for fictional characters, are now available to just about anybody who can afford them. However, due to the uniqueness of those choices, they are often considered to be too controversial and face a significant amount of criticism. And, the criticism allows a society to reevaluate our values and judgments.     

I believe this must be an extremely difficult decision to make, in spite of what Ashley’s father said. Assuming that I had a child with a similar condition, what would I do? Would I have my child undergo the treatment and stop its growth based on the belief that it’d improve its life? I have to say, I would probably not. I have no doubt that it was the parents’ best intention to have the treatment performed on their “Pillow Angel.” However, I wonder, can’t a quadriplegic adult go outside by riding on a reclining bed on wheels? Can’t the parents hire bigger caretakers so they can lift adult Ashley? Is carrying her the only way to give Ashley a loving touch of family? What about lying next to her or holding her hands?

On the web site, the parents wrote, “Ashley’s biggest challenges are her comfort and boredom… [The treatment] goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and for the rest of her life.” I just don’t seem to be convinced that should be enough of a reason to stop a person’s physical growth. I feel uncomfortable to believe that her mental growth should match her physical one. Plus, if she is capable of getting bored, what else does she feel?

There has been a debate on whether parents should get young deaf children hearing implants. As a matter of fact, many deaf adults oppose the procedure stating that being deaf is part of who they are and it is not to be fixed. Of course, it is a different argument here since Ashley’s brain doesn’t function to think, establish an opinion. Although, that certainly makes me think of how capable we as humans are of adjusting ourselves to our environments and conditions, and how our imperfections construct who we are.  

I also agree with Dr. Jeffrey Brosco of the University of Miami, who co-authored an editorial criticizing the treatment in the October issue of the Archives of Pediatrics & Adolescent Medicine. Although he praises the Seattle doctors for publishing the case report and inviting the dialogue, Dr. Brosco wrote, “… in the end, more funds for home-based services, not more medication, is what is called for.”

Nonetheless, I’d like to honor all the parents who face difficult decisions daily for their angels. It is truly overwhelming to see how bravely those people venture unknowns just like the angel who jumped off a skyscraper to become a human and obtain the woman’s love. It wouldn’t be too much of an exaggeration to say that their love and devotion fuel the evolution of medical science. 

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Nao Gunji is English assistant editor of the Rafu Shimpo and can be reached at ngunji@rafu.com Ochazuke is a staff-written column. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.