Ashley's Treatment: Family Stunts Disabled Daughter's Growth, Medical Debate Sparks

A family in Washington, with the blessing of their doctor and a hospital ethicist, has stunted the growth of their nine-year-old daughter, Ashley in order to provide her better care and keep her comfortable.

Ashley has severe mental and physical disabilities: she cannot walk or talk. Her parents, who have not released their names, used estrogen treatments to keep Ashley at 4'5". The parents claim that being at this height will make it easier for the family to care for her and include her in family activities.

According to a news report from NPR on January 5, 2007, the family's pediatrician played a role in researching and approving this treatment. He told NPR:

"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. "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."

Ashley's parents feared that as their daughter grew in size, they would be unable to lift her or care properly for her-and would have to face putting her in a group home for people with disabilities, or hire an in-home attendant and purchase expensive mechanical lift equipment. They wanted to be able to care for her themselves, they told NPR. Adding to the benefits of this, another pediatrician from the University of Miami told NPR that a few weeks ago, he was mourning with a family who had to place their 19-year-old son in a group home: he was over 200 pounds and they could no longer care for him. The family was devastated.

"Ashley's life is her family," says Diekema in the NPR report. "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."

So, the treatments began. For several years, Ashley was given massive doses of estrogen, which stopped her from growing beyond a child's size. Her breast tissue and uterus were removed.

Ashley's parents had a website set up to inform other parents, in similar situations of this treatment option, now called "Ashley's Treatment," but they decided to take it a step further. While remaining anonymous, they did speak to folks at NPR and other news sources to release the story-and it has sparked some controversy.

Some doctor's disagree with using severely disable people as basically guinea pigs for odd medical treatments. Dr. Jeffrey Brosco, from the University of Miami, also an ethicist says that Ashley's story is diverting attention away from the bigger issues, such as side effects and straying away from the issue that in America, "we aren't doing a good job of helping parents keep their adult children at home," he said.