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 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.
