Parents stunt medically fragile child's growth.

[eefanincan]

Parents are keeping impaired child small
They say letting her grow would make it hard to care for her
Sam Howe Verhovek, Los Angeles Times

Sunday, January 7, 2007


(01-07) 04:00 PST Seattle -- 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 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 deep 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 past few years designed to stunt her growth radically.

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 have attained roughly average height and weight for a woman -- 5-foot-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 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 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 posted earlier this week on the Web, "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 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'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 finally 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 -- ashleytreatment.spaces.live.com/blog/ -- and to photographs of the girl: ashleytreatment.spaces.live.com/photos/.

The father had declined all media requests for an interview.

"I cannot explain something this complicated in an interview," he said by telephone.

But, 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 with her siblings, who are not disabled, they have a dark box on the faces of the siblings, 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 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.

"I think most people, when they hear of this, would say this is just plain wrong," said Brosco. "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 his 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 could feel pressured on a number of fronts to have their children undergo it, to avoid the agonizing future 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 Daniel Gunther, the Seattle 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," said Gunther.

"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 the age of 6 1/2, began to show unusually early signs of pre-pubescence, including pubic hair and the 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 by some involved in deliberations as a software executive -- made a PowerPoint demonstration listing several benefits for it.

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.

Ashley's father, who said in the phone conversation that he was speaking on behalf of both parents, said they both 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 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?"

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I'm not sure how I feel about this. I understand why the parents have done it, but don't necessarliy agree.

I can say, however, that this is done more frequently than I think most people are aware--- although it's not as drastic as in this situation. Sometimes, girls are given birth control pills so that the hormones will somewhat stunt their growth. It's usually done in cases where they think there is potential for them to be abnormally tall and possible face health problems. It's done under the care of an endocrinolgist as was the case with this story. Personally, I don't agree with it for that instance, --- and I can speak from experience as I went through it. But, to be fair, at 6 feet, I often wonder how tall I might have been without the treatment.

[faceless]

that's a really tricky deabte for sure, but if there was no chance of a cure for her condition then I think it might be a good idea to do what they plan. I never knew they did that kind of thing at all, but if it helped you eefan, then who can complain?

[Skylace]

That really is interesting. And like Face said some things to debate.

I am glad the treatment worked for you. Things like that always amaze me so much.

[IRiSHMaFIA]

That was a really interesting read.

I think it very understandable why the parents want to keep her small, as it's obvious it would be easier for them to give her proper care. I think their hearts are in the right place and it's not about taking anything away from the child but adding any quality of life they possibly can.

I understand how it could be a dilemma in what's decent towards a human life, but when it's to increase the comfort and conditions then I think it's for all the right reasons.

[eefanincan]

[Marcella-FL]

100 years ago she would have been allowed to die if she couldn't eat on her own.

I think their hearts are in the right place, they thought it through and made the best decision for their family. I just thank god I don't have to make that decision.