Seattle – This is about Ashley’s dignity. Everybody examining her case seems to agree at least about that.
Ashley is a 9-year-old who has a severe brain impairment that cannot be cured. She cannot walk or talk. She cannot keep her head up, roll over, or sit up by herself. She is fed with a tube. Her parents call her “Pillow Angel.”
Her parents say they feared that their angel would become too big one day – too big to lift, to move, to take along on a family outing.
And so they decided to keep her small.
In a highly unusual case that is stirring deep ethical debate in the medical community and elsewhere, doctors at Seattle Children’s Hospital and her parents are describing how Ashley has received treatment to stunt her growth.
“Growth attenuation” is expected to keep Ashley’s height at about 4 feet 5 inches and her weight at about 75 pounds for the rest of her life. Had she not been given the treatment, doctors estimate, she would have attained average height and weight for a woman – 5 feet 6 and about 125 pounds.
The radical solution has drawn plenty of criticism and even outrage from some doctors and caregivers, who say it is a fundamental violation of a person’s dignity. Some say it’s also a violation of the medical oath: First do no harm.
But Ashley’s parents say the move was a humane one, allowing her to receive more care, more interaction with her younger brother and sister, and more of the loving touch of parents and others who can still carry her.
As a result, they say in a written account, “We will continue to delight in holding her in our arms and Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long.”
The girl’s treatment has involved a hysterectomy, surgery to remove her breast buds, and high doses of estrogen.
High-dose estrogen was used occasionally in the 1950s and 1960s, mostly on teenage girls whose parents were concerned about the social stigma of being too tall. The drugs could stop a 5-foot-9 girl from becoming, say, 6 feet tall. As that stigma has gone out of fashion, so has the treatment, medical ethicists say.
Publication of the case set off criticism of the parents’ decision – “eugenics,” “slippery slope,” “Frankenstein-esque” and “despicable” are some of the printable contributions to various websites on the topic.
But it wasn’t until New Year’s Day that Ashley’s parents – who have not identified themselves publicly – finally told their side of the story through a website, ashleytreatment.spaces.live.com.
Medical experts said the radical treatment to inhibit growth of a profoundly disabled person had never been discussed – and debated – in mainstream medical journals before.
“It’s simply the first reported case any of us know about,” said Jeffrey Brosco, a pediatrician at the University of Miami who was co-author of an editorial criticizing the treatment in the October issue of the Archives of Pediatrics & Adolescent Medicine.
In the editorial, Brosco and co-author Chris Feudtner called growth attenuation “ill advised.” If the treatment becomes more widely available, they wrote, parents of severely cognitively disabled children could feel pressured to have their children undergo it.
But Daniel Gunther, the Seattle pediatric endocrinologist who has overseen Ashley’s treatment at Seattle Children’s Hospital, said it was a humane alternative that some parents could find to be in the best interest of the child.
“It’s very natural for people hearing about this case to have an initial sort of, ‘You’re kidding me … how could you do this?’ reaction,” he said in an interview. “What I have found is that if you really examine it, if you actually lay out the benefits of this to the child, then people start to see the possible wisdom in this.”
The case was brought before the hospital’s ethics committee in 2004. At one meeting, the father – described by some involved in deliberations as a software executive – made a PowerPoint demonstration listing several benefits for growth attenuation.
Given that the child was found by a variety of doctors to be profoundly impaired, with virtually no indications of improvement in her intellectual development, the committee found in favor of the parents’ right to seek growth attenuation.
The case was not publicized at the time and therefore did not draw a legal challenge from anyone seeking to prevent it.
In a phone interview, Ashley’s father, said he was especially bothered by critics’ allegations the treatment was undertaken for “convenience” of the parents.
“That’s simply not true at all,” he said. “Anybody who thinks that, I’d ask them to read what’s on the website.”
In that account, 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.”
And, they wrote: “The objection that this treatment interferes with nature is one of the most ridiculous objections of all; medicine is all about interfering with nature. Why not let cancer grow and nature takes its course. Why give antibiotics for infections?”
