MICHELE NORRIS, host:
The case of a severely disabled Seattle girl is raising a medical and ethical controversy. Her parents deliberately stunted her growth to keep her at 4 foot, 5 inches tall. The parents say it's for their daughter's comfort and so that they can more easily care for her, carry her, and include her in family activities.
NPR's Joseph Shapiro reports.
JOSEPH SHAPIRO: The first pictures of the 9-year-old Ashley appeared this week on the family's Web site and in the Los Angeles Times. Ashley's got a big smile and bright eyes. Her body is strapped into a stroller.
Ashley's parents don't want their names used or to speak about the treatment they chose other than in the explanation posted on their Web site.
Dr. Douglas Diekema is a pediatrician and ethicist at the hospital that worked with the family.
Dr. DOUGLAS DIEKEMA (Pediatrician, Ethicist): Ashley is a little girl who is unable to talk and unable to walk and interacts with individuals like a baby would. She can't do anything for herself. She really needs help feeding and dressing and moving about. And she's completely dependent on other people for care.
SHAPIRO: So when another doctor at Children's Hospital and Regional Medical Center in Seattle suggested they could stunt their daughter's growth, the family researched it and then asked the hospital to help.
Diekema was part of the ethics committee that met and agreed that the treatment was the best thing for Ashley.
Dr. DIEKEMA: Ashley's life is her family. She's got a very small world, just like babies have very small worlds. It's all about their parents. And Ashley's is all about her parents and her siblings.
It's really important to the parents to be able to provide her with as personal a level of care as they can. And so, Dad would much prefer to pick her up in the morning out of bed and give her a hug and carry her to her chair and carry her from the chair to the car for as long as he can do that, physically.
SHAPIRO: The treatment was highly unusual. For a couple of years, until recently, Ashley was given massive doses of estrogen. That stopped her from growing beyond her child size. And at the Seattle hospital, her uterus and breast tissue were removed.
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.
Dr. DIEKEMA: Would it be inappropriate with somebody who had the capacity to develop at a greater level? Very possibly. I would never advocate this for a child with Down Syndrome, for example.
SHAPIRO: Many parents of severely disabled children worry about how to care for their children as they grow older and bigger. They rely on in-home aides and mechanical lifts, but those are not perfect solutions.
Dr. Jeffrey Brosco is a pediatrician and ethicist at the University of Miami.
Dr. JEFFREY BROSCO (Pediatrician and Ethicist, University of Miami): This is a very common problem. Just last week, I was mourning with a family because their 19-year-old son is over 200 pounds. He's gotten much more aggressive. And they've had to let him move into a group home because they were unable to care for him at home. The mom just couldn't do it anymore.
And many families face this really horrible decision. They've been caring for a child all the child's life, and now that child is too big and too strong and they're not physically able to do it.
SHAPIRO: Still, Brosco is worried about Ashley's case, and he's written about it in s medical journal, 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 to euthanasia. But he is particularly worried about all the focus on this one case in Seattle.
Dr. BROSCO: 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 of supporting families in helping keep their adult children at home with them.
SHAPIRO: Brosco says what families really need is in-home aides, technology to help them with chores like lifting and other support. He says that's the daily common problem, and that Ashley's case - compelling as it may be - has little to do with the everyday struggles of other families who care for children with severe disabilities.
Joseph Shapiro, NPR News.
NORRIS: Ashley's family describes her treatment. There's a link at our Web site, npr.org.
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