By David Lohr

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January 5, 2007

SEATTLE, Wash. (Crime Library) — A nine-year-old girl, identified only as "Ashley" on a blog her parents created, has become the subject of a worldwide ethical debate.  According to her doctors, Ashley has static encephalopathy, which is described as a severe brain impairment.  She cannot walk, talk, or swallow food, and she has been diagnosed with the awareness level of a three-month-old baby.

"Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop," her parents wrote on their Internet blog.  "Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause.  Doctors call her condition 'static encephalopathy of unknown etiology,' which means an insult to the brain of unknown origin or cause, and one that will not improve... Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk.  She is tube-fed and depends on her caregivers in every way.  We call her our 'Pillow Angel' since she is so sweet and stays right where we place her—usually on a pillow."

Due to the nature of Ashley's ailments, her parents, with the approval of a medical ethics committee, decided to treat the girl with large doses of hormones to halt her growth.  The reason for the 'Ashley Treatment', as her parents refer to it, was to keep her from getting to big for them to lift.  As a result, she now weighs 65 pounds and she will never grow past 4'5".  Her parents also opted to have her uterus and breast tissue removed. The treatment involved large doses of estrogen, which could cause cancer to Ashley's uterus if that organ were not removed. The surgery was completed in July 2004, at Seattle Children's Hospital.

"Unlike what most people thought, the decision to pursue the 'Ashley Treatment' was not a difficult one," her parents explain in their blog.  "Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around."

Opinions are divided on whether or not Ashley's parents made the right decision.  Some say they did what was best for their child, while others claim the treatments were a violation of the medical oath: first, do no harm. Clearly, keeping Ashley small and lightweight makes caring for her much easier for her parents now and when they get older.

"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," Dr. Jeffrey Brosco, a University of Miami pediatrician, told the Los Angeles Times.

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Contact  David Lohr at           crimewriter74@hughes.net

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