Behind the Pillow Angel
Doctors at the Seattle hospital that operated on a disabled girl to keep her from reaching sexual maturity -- the controversial "Ashley Treatment" -- were more troubled by the procedure than has been reported previously.
By Rebecca Clarren
Feb. 9, 2007 | Ever since the "Ashley Treatment" caused a public sensation last month, the prevailing debate has centered around whether Children's Hospital and Medical Center in Seattle, which performed the controversial procedure, acted in the best interest of the mentally impaired child. The fact that the hospital's ethics committee signed off on the treatment, which included removing a 6-year-old girl's breast buds, giving her a hysterectomy, and administering high doses of estrogen to keep her short, has been held up as a backstop to discussion. "It was the consensus of the committee that this did in fact actually have potential to improve her life significantly and there was very little actual harm," Dr. Douglas Diekema told Larry King on CNN. Diekema led the ethics panel at the hospital and co-authored a medical journal article on the treatment. When the Los Angeles Times covered the journal article in January, it sparked a worldwide debate in the media, from an Australian radio show to the New York Times opinion page.
While it is true that the committee reached consensus, the truth is more complicated. The committee's arrival at consensus was anything but easily reached. After the journal article was publicized, the hospital attempted to present a united front to the public. It asked that no doctor, aside from Diekema and Daniel Gunther, the endocrinologist who performed the surgery, speak to the media. Yet Salon has spoken to pediatricians and doctors inside the Seattle hospital who remain deeply troubled by the so-called Ashley Treatment. Although they were somewhat more circumspect than critics at other medical centers, some of whom called the disfiguring treatment appalling, they agreed that disapproval inside the hospital was more acute than has previously been known.
Dr. Charles Cowan is a developmental pediatrician at the Seattle hospital and one of Ashley's doctors. He was not on the ethics committee but was in the room during the debate. "It was a really complicated discussion and everybody was emotionally distraught," he said. "Nobody was cavalier about this. On the one hand, we wanted to make it right for the family. When children are severely disabled, you can't untangle their interest from their parents." But when it came to backing the treatment, he said, "it was a very hard thing for us to violate our instincts and do that for parents and this to the child."
As those who have followed the story know, Ashley's parents requested the treatment to keep their daughter small and desexualized so they could continue to care for her at home and provide her with the "best possible quality of life." The parents, who have not identified themselves, call their daughter a "Pillow Angel" because she is "so sweet and stays right where we place her -- usually on a pillow." Rather than grant media interviews, the parents maintain a blog to describe their experiences with Ashley.
Because their request was novel and likely to be controversial, the Seattle hospital medical director convened an ethics panel to review the case and make a recommendation. Made up of hospital and University of Washington Medical School employees, the panel included doctors, nurses, administrators, social workers, an ethics professor, a chaplain and a lawyer -- 18 in all. The names of the panelists are confidential and the hospital has not made a record of the discussion public.
The committee convened on May 4, 2004. The session began with a PowerPoint presentation by Ashley's parents that described Ashley's life and why they wanted to keep her small. No record exists of exactly what they told the committee. But their blog outlines their reasoning and details of their daughter's life.
Ashley was born healthy and normal, but around the age of 3 months, her brain stopped developing. She has static encephalopathy with global developmental deficits, a nonspecific term that means that her entire brain is abnormal and its deficiencies will neither improve nor decrease. In her case, she will never sit up, speak or walk. Her caregivers will always transport her, feed her through a tube and change her diapers. Ashley reacts to light and music -- she loves opera, her parents said -- and smiles and laughs.
In early 2004, at age 6 and a half, she started to grow pubic hair, develop breast buds and enter a growth spurt. Her parents feared that if she continued to grow at this rate she would become too large to care for in the home. The mother worried that Ashley, like many mentally disabled women, would misunderstand and fear her monthly menstrual blood and suffer from cramps and breast tenderness, exacerbated by the straps that would cross her chest to keep her upright in a wheelchair. Her parents also feared that breasts could "sexualize" Ashley toward a caregiver, inviting the possibilities of abuse and pregnancy if she were raped.
"Ashley has no need for her uterus since she will not be bearing children," the parents wrote on their blog. "Ashley has no need for developed breasts since she will not breast feed and their presence would only be a source of discomfort to her." Remaining child-size, the parents explained, would not only decrease the incidence of bed sores and bladder infections, but make it much easier to move Ashley around. As a result she "can continue to delight being held in our arms and will be taken on trips more frequently and will have more exposure to activities and social gatherings."
The committee members met Ashley and watched her interact with her parents. They saw her in a wheelchair and how she responded to her father's voice. "We got to see this little girl and see a little slice of what her life was like," Diekema told Salon. "It's very clear that Ashley's life is pretty small, that it's about her family. It's not about running around on the playground or dating. Her life is what a 3-month-old's life is like."
After Ashley and her parents left the room, the committee spent two hours in debate. At the end, no one voted with a show of hands. But in the ensuing discussion, the air was fraught with tension. The committee grappled with the following questions. How does keeping Ashley smaller help her? Does the treatment take away anything important to Ashley's own life? They discussed alternatives to a hysterectomy, such as a birth control treatment that erases a monthly cycle. Yet that had negatives as well: Dosages of estrogen her entire life could increase her risk of terminal blood clots. When Ashley went for her annual pap smear and breast exam, she'd have to undergo anesthesia.
"There weren't easy answers here," Diekema said. "People didn't agree at the beginning what to do. But we heard arguments and debated and discussed and ultimately pretty much reached agreement to let the parents have these things done. Everybody left the room with some reservations because there are uncertainties. But nobody left the room feeling like we were making a big mistake. We thought the benefits were more likely to occur than the potential for harm. I think that even the most reluctant person in the room felt that this was at least a draw."
Several months after the meeting, surgeons at the hospital performed the hysterectomy and removed Ashley's breast buds. Shortly after surgery, they began a 30-month regimen of high-dose estrogen that would limit her adult height by prematurely fusing her bones' growth plates. Today, at age 9, Ashley is 4-foot-5 and weighs 65 pounds. Expected to have a normal life span, she will continue to age. Eventually she'll grow wrinkles and her hair will gray. Her joints may creak but she'll remain short, never grow breasts, have a period or become pregnant.
Next page: The treatment "is bordering on mutilation"
