"We Did What Was Best for Ashley"

By Anastacia Mott Austin

"The ‘Ashley treatment’ was successful in every way," say the parents of a severely disabled girl, a year after they went public about having their daughter undergo a hysterectomy, removal of breast buds, and hormone treatment to stunt her growth.

Identified only as Ashley, the now 10-year-old girl has cerebral palsy, and her parents say she has the functional physical and mental capacity of a six-month-old baby.

They decided to submit their then six-year-old daughter to admittedly radical surgery, including the removal of her uterus and breast buds. She also underwent high-dose estrogen therapy to stunt her further growth.

They did this so that their so-called "pillow angel" could remain small enough to be easily cared for by her family, and would not have to remain in the care of someone outside of her family on outings, vacations, etc. The parents added that they felt Ashley would also have more access to "cuddling, snuggling," and hugs if she were smaller.

During an interview this week with CNN the parents, who wish to remain anonymous, repeatedly referred to their daughter, and others in similar situations, as "pillow angels." They explained why they felt their decision would benefit their daughter and have few side effects.

While the decision to stunt her growth has been understood by some, others question the need for such extensive surgeries as removing the girl’s uterus and breast buds. The family explained through their lawyer that the girl is often lying on her back, and that "large breasts would make [that position] uncomfortable," and that without a uterus, "she will never suffer any menstrual cramps, bleeding, or pain." The parents added that the girl had already shown a fear of blood.

Their reasoning is that since she will never mature mentally beyond childhood, that experiencing such traumatic physical changes as puberty would be unnecessarily stressful. Apparently undergoing a hysterectomy and removal of her breasts at age six was considered less stressful to her.

Disability rights groups were horrified by the case, and other parents of children with profound disabilities were quick to share their opinions on Internet blogs. One mother wrote, "My son doesn’t walk, doesn’t talk. He’s hard to carry. He’s not going to get easier to carry. And still…I don’t understand removing healthy tissue and functioning organs. Growing is not a sin or a disease…it’s what kids’ bodies do, even disabled bodies."

The Washington Protection and Advocacy System, a private watchdog group looking out for the rights of people with disabilities, says that the hospital that performed "the Ashley treatment" did so in violation of constitutional law.

Mark Stroh, the executive director of WPAS, wrote in a statement to the press, "Washington law specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval."

The hospital admitted the error. Dr. David Fischer, executive director of Seattle Children’s Hospital, released a statement saying, "We deeply regret that a court order was not obtained…We take full responsibility."

The endocrinologist involved in Ashley’s case, Dr. Daniel Gunther, committed suicide last fall, though no evidence can be found documenting that it was related to the case.

The ethicist who chaired the panel deciding whether to permit the parents’ request, Dr. Douglas Diekema, also spoke to CNN reporters. Dr. Diekema is the education director at the Treuman Katz Center for Pediatric Bioethics in Seattle, Washington.

When asked by reporters about the dangers of infantilizing individuals like Ashley, especially in light of her now permanent small size and her parents’ reference to her as a "pillow angel," Dr. Diekema responded, "If Ashley's brain is the brain of a 6-month-old, then Ashley should probably be treated as a 6-month-old."

Attorney for disabled groups Stephen Rosenbaum disagrees. "I have a lot of compassion for this family," Rosenbaum told CNN. "But they should know that Ashley has a right to develop as a human being."

One angry mother of a disabled son wrote, "Using their logic, why not just perform quadruple amputations? I mean, really, she’s not going to use her arms and legs."