Treatments to Keep Disabled Girl Small Stir Debate

The parents of a severely mentally disabled girl this week defended their decision to use medical treatments to keep her child-sized for the rest of her life.

The 9-year-old, named Ashley, lives in Washington state. She suffers from a type of brain damage called static encephalopathy and has the mental ability of a 3-month-old, the Seattle Times reported yesterday. She cannot walk, talk or keep her head up and is fed through a tube. Her parents said keeping her small will make her bedridden existence more comfortable.

"We call her our Pillow Angel since she is so sweet and stays right where we place her, usually on a pillow," her parents, who want to remain anonymous, wrote online.

The treatments, begun after Ashley's parents noticed signs of puberty, included high doses of estrogen and a hysterectomy and were carried out after consultations with doctors at Seattle Children's Hospital in 2004. The procedures will keep Ashley at about 4 feet 5 and 75 pounds, making her less prone to bedsores and easier to move.

The process, known as growth attenuation, became public when Ashley's doctors disclosed details in the Archives of Pediatrics and Adolescent Medicine in October last year. That prompted an ethical debate over whether severely disabled children should be subject to medical intervention to stunt their growth.

"I think most people, when they hear of this, would say this is just plain wrong," Jeffrey Brosco, a pediatrician at the University of Miami, wrote in an editorial in the journal. "But it is a complicated story and when you get into this issue you can understand the difficulties."

In their posting, which includes photographs of Ashley, the parents said the central purpose of the treatment was to improve Ashley's quality of life, not their own.

Their daughter would be more physically comfortable free of menstrual cramps and the weight of fully developed breasts, and a smaller, lighter body is better suited to constant lying down, they said.