Parents defend decision to keep disabled girl child-sized

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.

The treatment has involved a hysterectomy, surgery to prevent breast growth and subsequent high doses of estrogen. Doctors say the treatment’s major risks come from the surgeries, but that it also carries potential benefits such as eliminating the risk of cancers.

But Ashley’s case involves an entirely separate ethical realm, that of whether a severely disabled person might be better off having his or her growth impaired.

But Daniel Gunther, a 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.

The case arose when the girl, at age 6 1/2 , began to show unusually early signs of pubescence, including pubic hair and breast growth. Gunther told the parents that growth attenuation was a possible option, and soon the parents were strongly pressing for the treatment.