Controversial Treatment Limits Disabled Child's Growth

For one family, the realization that their six-year-old daughter, Ashley, would soon outgrow their care was overwhelming.

Born with brain damage from a condition called static encephalopathy, Ashley would never walk, talk, eat or sit up on her own. Her mental abilities would never develop past that of a six-month-old baby, and she would rely completely on her parents for care.

At just 4 feet 5 inches tall, it was easy for Ashley's parents to change her diapers, feed her and bathe her. But before long, she would likely grow to nearly 5 feet 6 inches. That would mean it would take two or more people to carry her anywhere.

Her father was faced with the realization that, instead of his own arms, a machine would soon be needed to lift his baby girl. And any trips or vacations the family took would become increasingly difficult.

Looking for a way to keep their daughter at home and provide her with the care she needed, Ashley's family went to the Seattle Children's Hospital for answers.

There, they learned about an unusual medical option -- a treatment to limit Ashley's growth so she would grow no larger than a six-year-old child.

Opting for the 'Ashley Treatment'

The highly controversial treatment, called growth attenuation, required giving the six-year-old high doses of estrogen that would close her bone plates, putting an end to her growth.

This means Ashley would grow no larger than 4 feet 5 inches, and her weight would top out at about 75 pounds.

At this size, Ashley's parents could continue to care for her themselves, and she would be less likely to develop infections such as bed sores and pneumonia.

"It was in her best interest to keep small, not only for her family but also for the medical benefit," said Dr. Daniel Gunther, the pediatric endocrinologist who oversaw Ashley's treatment.

Additionally, Ashley's parents worried about her developing breasts, as the family had a history of breast cancer. They were also concerned about her future menstruation, which could cause her alarm and discomfort.

"Menstruation for a little girl with a developmental disorder can be very frightening," said Dr. Douglas Diekema, professor of pediatrics at the University of Washington and a member of the ethics committee that reviewed Ashley's case. He added, "There is no real advantage to her having breast development."

So, doctors at the hospital suggested that in addition to growth attenuation, Ashley also receive a hysterectomy and the removal of her breast buds.

After both procedures, said Gunther, her risk of developing breast and cervical cancer "would be reduced to zero."

In 2004, following review by the Seattle Children's Hospital ethics committee, doctors gave the family the go-ahead to proceed with Ashley's treatment, and she recently completed her course of hormones.

Now 9 years old, she is 4 feet 5 inches tall and weighs about 70 pounds.

Ashley's mother and father, who have chosen to remain anonymous, stand by their decision. But the procedure has ignited a heated debate: Does a family have the right to alter their child's growth?

A Question of Convenience

Critics quickly came forward and accused the family of abuse. They argued that Ashley's surgery was an excuse to make the lives of her caretakers easier.

"[Just because] the child is going to continue growing is no excuse to commit such an atrocity," said one critic on a popular message board.

"How can these parents be so selfish … to do what they feel is necessary to make their lives easier?" asked another.

But doctors disagreed that the decision was made for the parents alone.

"The family never once said that convenience was their motivation," said Diekema.

In truth, he said, "making Ashley's life easier would actually make the family's life easier."

"From a medical point of view, this is not some drastic treatment out of line for children with mental disabilities," Gunther said. This was a "medical intervention to improve Ashley's quality of life."

Despite Benefits, Debate Continues

Despite the certainty of Ashley's doctors and the support of the hospital ethics committee, the debate over the ethics of the procedure continues outside of Seattle Children's.

"I have no doubt that due consideration was given to the issues, nor do I think we can expect patients, their families, or their caregivers to shoulder the burden of a system that fails to take care of children like [Ashley]," said Jonathan Moreno, visiting professor of biomedical ethics at the University of Virginia in Charlottesville, Va.

Ashley's parents imposed more changes to their daughter's already fragile body, said Moreno. The move was a "grave ethical decision," not a simple one.

But Ashley's dramatic medical treatment reflects what we have come to expect from medicine -- major change -- said Dr. Stephen Lefrak, director of the Humanities Program in Medicine at the Washington University School of Medicine in St. Louis, Mo.

"One of the major goals of medicine is to alter or interfere with 'nature' or natural processes to improve duration and quality of life for individual patients," said Lefrak. For example, "if a patient is too short because their endocrine system is not functioning properly we hormonally increase their height (and other things)."

Similar to Ashley's own case, "if a patient is at great risk of genetic breast cancer, one option is to do bilateral mastectomy," he said.

Can Other Families Benefit from the Treatment?

Now, three years later, the doctors said Ashley is happy and healthy. And her parents know that they will be able to care for her easily.

Their hope is that this procedure will someday be available to other families with severely disabled children.

Diekema is cautiously optimistic.

"By no means are we advocating this for every developmentally disabled child," he said, adding that "there is only a small subset" who could benefit from this procedure.

Visit the Ashley Treatment Web site here.