Parents' Plan to Stunt Girl's Growth Sparks Debate

Ashley in her wheelchair in 2006.

Ashley in her wheelchair in 2006. hide caption

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Ashley's family Christmas photo.

Ashley's family Christmas photo. Courtesy of Ashley's family. hide caption

itoggle caption Courtesy of Ashley's family.
Ashley, bundled up during a December 2006 power outage.

Ashley, bundled up during a December 2006 power outage. Courtesy of Ashley's Family hide caption

itoggle caption Courtesy of Ashley's Family

The first pictures of the 9-year-old girl, identified only as Ashley, appeared this week on the family's Web site and in the Los Angeles Times. She has a big smile and bright eyes. Her body is strapped into a stroller.

Ashley's parents have stunted her growth to keep her at 4 feet 5 inches. Their daughter has severe physical and mental disabilities. They say the treatment is for her comfort and to make it easier to carry her and include her in family activities.

The parents don't want their names used or to speak about the treatment they chose beyond the explanation posted on their Web site. But the case of their daughter has created a medical and ethical controversy.

"Ashley is a little girl who is unable to talk and unable to walk and interacts with individuals like a baby would," says Dr. Douglas Diekema, a pediatrician and ethicist at the Children's Hospital and Regional Medical Center in Seattle, which has worked with the family. "She can't do anything for herself. She really needs help feeding and dressing and moving about. She's completely dependent on other people for care."

So when endocrinologist Daniel Gunther, also a doctor at the Seattle hospital, suggested stunting their daughter's growth, the family did research, then asked the hospital to help.

Diekema, a member of the ethics committee that met, agreed that the treatment was the best thing for the girl.

"Ashley's life is her family," says Diekema. Like a baby, she has a very small world, and it's "all about her parents and her siblings. It's very important to the parents to provide as personal a level of care as they can. Dad would much prefer to pick her up in the morning out of bed and give her a hug and carry her to the chair and carry her from the chair to the car for as long as he can do that physically."

The treatment was highly unusual. For several years, until recently, Ashley was given massive doses of estrogen. That stopped her from growing beyond her child's size. And doctors removed her uterus and breast tissue.

The parents now refer to this as "Ashley's Treatment" and say it could benefit other children like Ashley.

Diekema, the hospital ethicist, thinks it would be used only in the rarest of cases.

"Would it be inappropriate with somebody who had a capacity to develop at a greater level? Very possibly. I would never advocate this for a child with Down syndrome, for example," Diekema says.

Many parents of severely disabled children worry about how to care for their children as they grow older and bigger. These families rely on in-home aides and mechanical lifts. But those solutions are not perfect.

"This is a very common problem," says Dr. Jeffrey Brosco, a pediatrician and ethicist at the University of Miami. "Just last week, I was mourning with a family because their 19-year-old son is over 200 pounds." His behavior is more aggressive, so the parents have moved him into a group home. They were unable to care for him at home.

Many parents of children with severe disabilities face this dilemma: What do they do when they're not physically able to care for the child? Still, Brosco is worried about the solution in Ashley's case. He's written about it in the medical journal Archives of Pediatrics and Adolescent Medicine, responding to an article by Ashley's doctors. He says it's not clear how well Ashley's treatment will work, whether it really will keep her small and comfortable. And there might be side effects, like seizures, for a girl who already has severe disabilities.

He's worried about doing odd medical treatments on disabled people — a group with a history of forced sterilizations and euthanasia.

But Brosco is particularly worried about all the focus on this one case in Seattle.

"I'm concerned that the attention being paid to Ashley's case might divert our attention from the larger social and political issue, which is that we are not doing a good job in helping [families] keep their adult children at home," he says.

Brosco says what families really need are in-home aides, technology to help them with chores such as lifting and other support. As compelling as Ashley's case may be, it has little to do with the everyday struggles of families who care for children with severe disabilities.

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