Parents halt growth of severely disabled girl
Los Angeles Times
This is about Ashley's dignity. Everybody examining her case seems to agree at least about that.
Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. 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," since she stays where they place her, usually on a pillow.
Her parents say they feared their angel would become too big one day — too big to lift, too big to move, too big to take along on a family outing.
So they decided to keep her small.
In an unusual case that is stirring ethical debate in the medical community and elsewhere, doctors at Children's Hospital & Regional Medical Center in Seattle and the parents involved are describing how Ashley has received treatment over the past few years designed to radically stunt her growth.
The treatment, known as "growth attenuation," is expected to keep Ashley's height at about 4-foot-5 and her weight at about 75 pounds for the rest of her life. Had she not been given the treatment, doctors estimate, she would attain roughly average height and weight for a woman: 5-foot-6 and about 125 pounds.
The radical solution has drawn criticism and even outrage from some doctors and caregivers who say it is a fundamental violation of a person's dignity to impose such impairment of their growth. Some say it's also a violation of the medical oath: First do no harm.
But Ashley's parents say the move was humane, 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 posted online this week, "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 subsequent high doses of estrogen.
High-dose estrogen was used occasionally in the 1950s and '60s, mostly on teenage girls whose parents were concerned about the social stigma of being tall. The drugs could stop a 5-9 girl from becoming, say, 6 feet tall.
As that stigma has gone out of fashion, so has the treatment, medical ethicists say.
But Ashley's case involves an entirely separate ethical realm, that of whether a severely disabled person's life might be improved by having his or her growth impaired.
Publication of the case in a national pediatric journal in October set off criticism of the parents' decision — "eugenics," "slippery slope," "Frankenstein-esque" and "despicable" are some of the printable contributions to various Web sites on the topic.
But it wasn't until 11 p.m. on New Year's Day that Ashley's parents told their side of the story.
That was when Ashley's father hit the send button on an e-mail and began entering chat rooms with a link to their story and to photographs of the girl.
The father had declined all media requests for an interview.
"I cannot explain something this complicated in an interview," he said by telephone Tuesday. "People think it must have been a horribly difficult decision" to have the treatment performed. "It really wasn't."
The parents have not identified themselves publicly, and, in family photos, they have a dark box on the faces of Ashley's siblings, who are not disabled, but not on Ashley.
Medical experts could not say for certain whether the case was unprecedented, but they did say the radical treatment to inhibit growth of a profoundly disabled person never before had been discussed in mainstream medical journals.
"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. "I think most people, when they hear of this, would say this is just plain wrong. But it is a complicated story, and when you get into this issue, you can understand the difficulties."
In the editorial, Brosco and co-author Chris Feudtner called growth attenuation "ill advised," although they applauded the Seattle doctors for publishing the case report and helping to "advance our ethical dialogue" on the topic.
If the treatment becomes more widely available, Brosco and Feudtner wrote, parents of severely cognitively disabled children could feel pressured to have their children undergo it, to avoid the agonizing choice of whether to send the fully grown child to an institution.
"High-dose estrogen therapy to prevent out-of-home placement simply creates a new 'Sophie's Choice' for parents to confront, where neither letting the child grow unchecked nor imposing shortness is without peril," they wrote.
"If we as a society want to fundamentally revise the nature of the harrowing predicament that these parents face, then, in the end, more funds for home-based services, not more medication, is what is called for."
But Dr. Daniel Gunther, the Seattle pediatric endocrinologist who has overseen Ashley's treatment, said the approach was a humane alternative that parents such as Ashley's 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. "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 arose when Ashley, at 6 ½, began to show unusually early signs of pre-pubescence, including pubic hair and the initial stages of breast growth.
Gunther told her parents that growth attenuation was a possible option, and the parents soon were pressing for the treatment.
The case was brought before the hospital's ethics committee in 2004.
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, and therefore did not draw a legal challenge.
Ashley's father, who said this week that he was speaking on behalf of both parents, said they were especially bothered by critics' allegations that the treatment was undertaken for "convenience."
"That's simply not true at all," he said. "Anybody who thinks that, I'd ask them to read what's on the Web site."
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?"
Copyright © 2007 The Seattle Times Company