Ethics Newsline®

SEATTLE
The case of a severely disabled girl whose growth is being intentionally stunted so her parents can more easily care for her as she ages has ignited an ethics debate.

Scientific American reports that the 9-year-old girl, identified only as Ashley, cannot move and is called the “Pillow Angel” by her parents, who customarily lay her on a pillow.

She was born with static encephalopathy, damage to the brain of unknown origin.

Her parents decided two years ago to ask doctors to stop her from growing so she could be transported and avoid other medical problems such as bedsores that could occur if she became too large to move, the Seattle Post-Intelligencer reports. She also underwent a hysterectomy and breast-bud removal to prevent the possibility of developing genetically inherited diseases that run in her family.

Ashley’s treatment became public when her doctors described the case in a pediatric journal.

The case immediately sparked fierce controversy, with critics charging that the surgery and hormone therapy, which will freeze her development at nine-year-old size, amounts to an experiment with sinister implications for the disabled, reports the Reuters news agency.

In an editorial in the Archives of Pediatrics & Adolescent Medicine, ethicist Jeffrey Brosco of Miami University, claims the procedure lacked proper research controls, according to a report from the U.K. Guardian. “This is a technological solution to a social problem. I work with severely disabled children and know how hard it is on families, but what we need most is better federal funding so that they can be cared for properly.”

But her parents and some ethicists and medical professionals vigorously defend the so-called Ashley Treatment. In an interview with the Guardian, Ashley’s father said the decision was actually an easy one.

“We clearly saw the benefits to Ashley’s quality of life,” he said. “We have also been criticized for harming Ashley’s dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old.”