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Health news for the Seattle area

Doctors keep girl small at parents' request

03:05 PM PST on Thursday, January 4, 2007

By DEBORAH FELDMAN / KING 5 News

SEATTLE - It is a medical and ethical decision few could imagine – parents and doctors using medical intervention to keep a child small.

It was done to a local girl at Children's Hospital in Seattle after her parents convinced the hospital's ethic's board it was in the girl's best interest.

We don't know the last name of the young girl named Ashley, but we do know a great deal about what has happened to her body during the past few years.

Ashley was diagnosed as an infant with a severe brain impairment called static encephalopathy. She can't walk or talk, She's fed through a tube and, according to her parents' Web site, has been at the same level of developmental ability since she was 3 months old.

As Ashley got bigger, her parents began to worry they wouldn't be able to continue caring for her if she grew too tall and heavy for them to bathe, lift and move her.

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Ashley can't walk or talk, and she's fed through a tube.

That's when they asked doctors at Children's Hospital if they could embark on an unprecedented medical path that included a hysterectomy, the removal of her breast buds, and a lengthy course of estrogen treatment to keep Ashley small.

Ashley's parents have declined all interviews, but on the Web site say: "We want to avoid sensationalism or philosophical debates about what we did and why we did it. We'd rather care for and enjoy Ashley than get into endless debates."

"Well, when I first heard about the case, initially I was a little startled," said Dr. Benjamin Wilfond.

Dr. Wilfond specializes in pediatric bioethics at Children's Hospital. He was not yet on staff when the 40-member ethics committee agreed to Ashley's treatment in 2004, but he says he understands the decision to allow it.

"In this case, being short is a benefit to the child. There are other parents that make decisions to make their children taller because that may be a benefit to the child. And so I think what all these cases have in common is the intention to help the child," he said.

Ashley's parents bring her to Children's Hospital every three months so that doctors can monitor her height and her weight, her bone growth, and her estrogen levels.

Ashley is now nine years old. After two-and-a-half years, she just wrapped up her treatments recently.

At 4 feet 4 inches and 70 pounds, her doctor believes she's almost done growing.

On their Web site, Ashley's parents say they did what they believe is best for their daughter, saying: "Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers."

Ashley's doctor estimates without the treatment, she likely would have grown to 5 feet 5 inches tall, with a weight of 125 pounds.

On their Web site, her parents say they and Ashley's grandmothers are the girl's only caregivers.

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