Parents defend decision to keep disabled girl small
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” because she stays right where they place her, usually on a pillow.
Her parents say they feared that 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.
And so they decided to keep her small.
In a highly unusual case that is stirring ethical debate in the medical community and elsewhere, doctors at Seattle Children’s Hospital and the parents involved are describing how Ashley has received treatment over the last few years designed to stunt her growth.
The treatment, known as “growth attenuation,” is expected to keep Ashley’s height at about 4 feet 5 and her weight at about 75 pounds for the rest of her life. Doctors expect her to have a normal lifespan. Had she not been given the treatment, doctors estimate, she would have grown into a woman of average height and weight -- about 5 feet 6 and 125 pounds.
The parents’ decision has drawn criticism and even outrage from some doctors and caregivers, who say such treatment is a 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 carry her.
As a result, they say in a written account posted on the Web 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 treatment has involved a hysterectomy, surgery to prevent breast growth and subsequent high doses of estrogen.
Doctors say that the treatment’s major risks come from the surgeries, but that it also carries potential benefits such as eliminating the risk of ovarian and breast cancers.
High-dose estrogen to inhibit growth 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.
But Ashley’s case involves an entirely separate ethical realm, that of whether a severely disabled person might be better off 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,” “despicable” and “Frankenstein-esque” are some of the printable contributions to websites 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 to doctors, reporters and others, and began entering chat rooms with a link to their story --https://ashleytreatment.spaces.live.com/blog -- and to photos of the girl: https://ashleytreatment.spaces.live.com/photos.
The parents have declined all media requests for an interview.
“I cannot explain something this complicated in an interview,” he said by telephone Tuesday.
He added: “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 of Ashley they have a dark box on the faces of her siblings, who are not disabled.
Medical experts could not say for certain whether the case was unprecedented, but they did say treatment to inhibit growth of a severely disabled person had never been discussed in mainstream medical journals before.
“It’s simply the first reported case any of us know about,” said pediatrician Jeffrey Brosco of the University of Miami, a 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,” Brosco said. “But it is a complicated story, and when you get into this issue, you can understand the difficulties.
“And,” he said, “our societal ethics may change.... But we are going to have to discuss this as a society. We are going to have to say this is right or this is wrong, and thus decide whether we will allow it.”
In the editorial, Brosco and co-author Chris Feudtner called growth attenuation “ill advised,” though 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 might feel pressured to have their children undergo it to avoid the agonizing choice of whether to put them in a special-care facility once they’re fully grown.
“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 Daniel Gunther, a pediatric endocrinologist who has overseen Ashley’s treatment at Seattle Children’s Hospital and Regional Medical Center, said the approach was a humane alternative that parents such as Ashley’s could find to be in the best interest of the child.
“Certainly we would never want the option for growth attenuation to become an obligation for growth attenuation,” Gunther said.
“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 arose when the girl, at age 6 1/2 , began to show unusually early signs of pubescence, including pubic hair and initial stages of breast growth.
As the parents consulted doctors, Gunther wrote in his description of the case in the pediatric journal, it became clear that “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.”
Gunther told the parents that growth attenuation was a possible option, and soon the parents were strongly pressing for the treatment.
The case was brought before the hospital’s ethics committee in 2004. At one meeting, the father -- described as a software executive by some involved in deliberations -- made a PowerPoint presentation listing several benefits of the treatment.
Given that the child was found by a variety of doctors to be severely 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 any legal challenge.
Ashley’s father, who said in the phone conversation that he was speaking on behalf of her mother, said they were especially bothered by critics’ allegations that the treatment was undertaken for the “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.”
They continued: “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?”