The Falcon   |   Volume 81, Issue 26

Published 6/02/10   |   Log In

Fighting for Ashley

'Pillow Angel' debate rife with complexity

By EVI SZTAJNO, News Writer

Published: January 24, 2007

After Associate Professor of biology Cynthia Fitch's 12 year-old niece was diagnosed with brain cancer, radiation treatment and chemotherapy became inevitable. Six years later, due to the treatment, her niece had to face the reality of never being able to have children.

But, as Fitch said, the first and foremost concern in her niece's case was her ability to live, and live in the best way possible.

When Fitch considers the recent Ashley "Pillow Angel" controversy in her Issues and Values in Biology class, which discusses current issues in bioethics, she believes that the same principle should apply.

Ashley is now a 9-year-old girl with static encephalopathy, another name for cerebral palsy. The condition leaves her with the permanent mental capacity of a 3-month-old. She is not able to speak, move or eat by herself, but she can respond vocally and smile at others.

After noticing signs of early puberty, her parents, who have remained anonymous, feared that if she grew, they would not be able to provide her with optimal in-home care.

Doctors at the Seattle's Children Hospital removed her uterus, breast buds and prescribed estrogen therapy to stunt her growth. The publication of Dr. Doug Diekema and Dr. Daniel Gunther's case study in the October issue of Archives of Pediatric and Adolescent Medicine, as well as the blog launched by her family in January, triggered waves of media attention and protests, mostly from disability advocates, across the nation and the world.

"Knowing what I know about the ethics board at Children's, whatever decision they came to I would never question it," said Fitch who invites Diekema, the clinical director of Treuman Katz Center for Pediatric Bioethics at Seattle's Children Hospital, to speak to the class about bioethics every other year.

In this case, Fitch said that it remains important to look at Ashley and her community, which Fitch defined as her parents, her doctors and extended family.

"Her community is not the world at large. Yet the world at large has decided to step in and become her community. Where were they all this time? They weren't allowed in because they weren't needed," she said.

"The disability advocates are saying that it's about the parents," Fitch said. "If it were about the parents, completely about the parents, don't you suppose other decisions would have been made? To me these parents are complete heroes.

"You don't get through an ethics board like the one at Children's and get to be selfish, you just don't," she said.

The Ashley Treatment

When Ashley's parents first approached Diekema, brother of SPU Professor of sociology Dr. David Diekema, with the idea of the procedures three years ago, he consulted the Seattle Children's Hospital ethics committee.

The committee, a 20-person board of doctors, social workers and persons in pastoral care, usually accepts three to four cases per year.

After a time of reviewing the case, the committee debate lasted approximately three hours. The family was present for the first part.

According to Diekema, her parents called for three procedures.

The hysterectomy, the surgical removal of the uterus but not the ovaries, would eliminate problems of future heavy menstrual bleeding and cramps. Ashley had been known to react negatively to the sight of blood.

Additionally, the parents asked for the removal of her breast buds in order to stop future development. With her mental disability, doctors say she would never be able to willingly nurse a child or attract a mate. The procedure would eliminate severe pain and discomfort, which runs in the family.

In order to continue her home care, the parents requested the non-surgical "growth attenuation treatment," a dose of estrogen 10 times as powerful as a regular birth control pill. While the increased risk of a heart attack remains, the risk of breast cancer, following the surgical procedures, no longer exists.

Each request was discussed and approved separately, Diekema said. Overall, Ashley will be about one foot shorter and 50 pounds lighter. Though she will age normally, she will never move past the pre-pubescent stage, have a period or develop adult female breasts.

The case report and the creation of the parent's blog launched a flurry of feedback both positive and negative. Support has been tempered by concerns of potential abuse which could occur in similar cases of disabled persons.

A reference to eugenics, a movement in early 20th-century America and Europe to "perfect" the human gene pool by sterilizing disabled individuals, has also been raised by the disability community.

Diekema addressed the issue in his article, stating that the comparison does not hold up. The intention of the Ashley treatment was not to sterilize her but to improve her life. He also stressed that the treatment should only be used on a case-by-case basis with the involvement of an ethics committee.

But as Fitch agrees, the end effect, Ashley's inability to reproduce, is the same.

Ethical Concerns

Stephen Drake is a research analyst for the national disability advocate group Not Dead Yet, which participated in a Jan. 11 protest in Chicago led by the Feminist Response in Disability Activism.

While no further protests are planned, the anger in the disability community about this case is increasing, Drake said in a telephone interview.

"People with disabilities are the only people in this country who can be legally tortured," he said, adding that all of the procedures preformed in Ashley's case had alternatives that he believes were not explored.

He also voiced his dismay about hospital ethics committees, saying that there are no consistent qualifications for ethicists. He added that there is no licensing for ethicists, thus no system of internal controls.

While part of the reason Diekema and Gunther published their case study was to seek the medical criticism of others, Drake said that Not Dead Yet has not tried to contact either the physicians or the parents.

"There is nothing to be accomplished by doing that," he said. Both parties, he believed, had stated their positions by publishing the paper and launching the blog.

He called on the medical community to have an open discussion about public policy with advocacy organizations.

The American Association on Intellectual Development and Disabilities (AAIDD), a Washington D.C.-based disability advocate group, has called for a ban on the procedure.

Steve Eidelman, the vice president of AAIDD, said in a telephone interview that "there was no one involved who represented Ashley's unique interest" and her consent was not obtained.

In their online statement, the organization argues that her future developments could not have been predicted for certain, that long-term effects are unknown and that there is too much potential for abuse.

Human Flourishing

Though not completely certain that Ashley's parents made the right decision, Professor of theology Rick Steele, who has raised the issue in his Christian Ethics class, said that the parents made a hard decision with all due diligence, care and forethought.

"When you have to raise a child with severe disabilities, convenience means something very different than 'Gee, I prefer going to the Red Apple instead of QFC because it's only one mile away from my house,'" Steele said. "Convenience here has to be contextualized as we are talking about the wherewithal of adults to provide necessary physical care for a child as long as the child lives."

When a child grows, Steele said, parents and caretakers are less likely to be able to engage them or travel with them.

"If you've got a child in a wheelchair you don't just pack up and go to the beach," he said. "You have to ask yourself, does that beach have ramps? Does it have paved walkways, bathroom facilities, and adequate parking within walking distance?"

While Ashley's family appears very eager to provide as much stimulation and social interaction for her, Steele is not certain that the parents "explored every option for social services and care which would have made it possible for them to care for Ashley if she had grown to full size." His comment echoes AAIDD's stance that more attention needs to be devoted to improving social care, rather than focusing on surgery or estrogen therapy.

As to the surgical procedures, though they are invasive, Steele points out that, given the assumption that Ashley's condition is irreversible, she will never know that her uterus was removed or have regrets about not being able to nurse her own offspring.

While accusations have been made that the family and the doctors involved are playing the role of God by going against nature, Steele said that medicine by definition goes against nature.

"If you catch a cold, you take Sudafed," he said. "We created a civilization which we believe will be to our best interest rather than simply allowing us to live under the sun, eat roots, and be hunter-gatherers."

The issue of contention for Steele is that the procedure was pre-emptive. But, he added, if you are going to keep a child small, you need to do it before puberty.

Whether the decision was right or wrong, what Ashley's case ultimately provides is an opportunity to ask the question of what constitutes human flourishing, Steele said.

Fitch agrees, saying that this case holds special value for SPU.

"I think this case teaches us about community. We can have differences of opinion, but we need to sit down and use wisdom and discernment. This teaches us about the value of community and the value of communication," she said, adding that any response should begin with a personal initiative to contact the ethics board and the family.

"If we really want to build bridges, then we've got to sit down and really find out what's going on, and where they are at, and come to them," Fitch said.

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