`Pillow angel' treatment dehumanizing

Cloning, fertility drugs, In Vitro Fertilization, pre-determination of baby's sex, viagra, etc. are promoted as a boon to the human reproductive process but it begs the question of how far are we from the bottom of the slippery slope. How long before we reach the Mengele stage. Parents in some parts of the world are using ultrasound to determine sex of the child and resorting to abortion if the sex is not male. I don't doubt this process is used by some to "weed" out children with disablities. This is all done to "improve" the life of the child so I don't understand why the following, which I personally find offensive, is a hot topic.

Helen Henderson
Toronto Star

Designer duds. Designer pets. Designer cripples and retards.

Is that how the world ultimately will see the work of a group of American doctors who treated a 6-year-old with mental and physical disabilities with hormones and surgery? Their point was to arrest her growth so she remains the little "pillow angel" extolled on her parents' website.

"We call her our `Pillow Angel' since she is so sweet and stays right where we place her – usually on a pillow," they gush on the site they started after the Los Angeles Times publicized a story previously known only to readers of the October 2006 issue of the Archives of Pediatric & Adolescent Medicine. (ashley treatment.spaces.live.com/blog/ )

Pillow angel. So sweet. Stays right where we place her.

And you thought the terms "cripples" and "retards" were offensive.

Dolls are sweet. Designer dogs are sweet. They look great on pillows or tucked under the arms of their owners, especially if they don't yap too much. Definitely portable, able to be included in all activities. Welcome at the dinner table.

Which brings us back to how Ashley's parents – specifically, her mother, we learn through the website – came up with the idea of limiting their daughter's size.

Diagnosed with a severe type of brain damage, Ashley "cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk," they tell us. "She is tube-fed...."

Already, at 6, she is reaching the limit of weight that family members say they can handle. Since they want to continue to care for Ashley at home, they discuss a plan with doctors at Seattle's Children's Hospital.

On May 5, 2004, they get the green light from the hospital's 40-member ethics committee to proceed with what they call "the Ashley treatment."

They decide – and the decision was "not a difficult one" – that "Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around."

Thus, over the next 2 1/2 years, doctors remove her womb, extract the tiny knots of tissue that would otherwise grow into breasts, take out her appendix for good measure and start giving her large doses of estrogen.

"We certainly do not feel defensive about it," Ashley's parents write in a seemingly interminable description of each and every thought and procedure.

They discuss the support they've had from around the globe, offer links to the hundreds of news stories about them and lament the "misinterpretation" of their motives in the media. Like the specialist who convened the hospital ethics committee, they seem surprised that their story would enrage so many people in the so-called disability community or attract such enduring public attention.

"You cannot attribute bad motives to these parents," Dr. Douglas Diekema said in a lengthy and thoughtful telephone interview this week.

And "No, we did not do this just because we could," he added emphatically in response to an observation about the mistrust with which medical treatments are regarded by people who feel they do not need to be "fixed" because they are not broken. "That is not what drove this."

He is surprised at the degree of interest outside the medical community.

"The hardest part is to see how at odds the disability community is from parents," says Diekema, who hears about their reaction first-hand from his brother, who was disabled in an accident.

"There's a real disconnect. The hard question is: are people with disabilities any better advocates for Ashley than her parents?"

Not necessarily. But their voices are compelling.

"Parents have to be able to make decisions; the question is what limits should there be," says South Carolina civil rights lawyer Harriet McBryde Johnson, who has written extensively about her own journey as a self-described "jumble of bones in a bag of skin."

Ashley's parents say theirs wasn't a hard decision "but it should have been," Johnson says. "The question is: are we smart enough to make protocols that work?

"Their statements say this is not about convenience but it really is about ease for the caregiver....

"It looks to me as if they lacked imagination or were afraid of the next step," she says, referring to solutions that improve mobility for adults with disabilities.

As for their decision to surgically stop their daughter's breasts from developing, partly because it would sexualize her, "surely we ought instead to be focusing on forbidding abuse."

Ashley's parents are operating on "the theory of indirect benefit," says Dick Sobsey, director of the University of Alberta's health ethics centre.

In effect, they argue that because her small stature will make it easier for them, the quality of her life will improve because they will be happier, Sobsey notes.

But he questions whether medical and surgical interventions with risk to someone with intellectual disabilities can ever be justified "when the most direct benefits accrue to others?"

Taken to extremes, in some parts of the world, a family might cut off the leg of a child who is already disabled to make him a more effective beggar, Sobsey says. "The argument is that the child who is disabled won't really need the limb and the whole family, including the child, will gain.

"But the theory that people who are already disadvantaged have less to lose doesn't hold. If you rob a small amount from a poor person, you could be taking all they have."

In an editorial on "the Ashley treatment" in the Archives of Pediatric & Adolescent Medicine, Jeffrey Brosco of the University of Miami argued: "If we as a society want to revise the nature of the harrowing predicament that (the parents of children with disabilities) face, then more funds for home-based services, not more medication, is what is called for."

Well said.