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"Ashley's Treatment": After a Year of Blogging, Parents Provide First Interview on Decision to Keep Child Physically Small

By Garry J. Wise, Wise Law Office, Toronto

Born with an undiagnosed severe brain injury, at 9 years old Ashley has the mental capacity of a 6-month-old. She is entirely dependent on her parents. She cannot walk, eat, talk, bathe or roll over on her own.

Concerned about the effects that puberty would have both on their child?s comfort and their future ability to care for Ashley, Ashley?s parents ? who remain anonymous- began researching what they have coined as ?Ashley?s Treatment? a combined surgical procedure and estrogen treatment with a goal of preventing Ashley from experiencing the regular effects of puberty including physical growth, menstrual cycles and breast development in the hopes of ?enhancing her quality of life?

In May 2004, Ashley?s parents presented Ashley?s Treatment to the Seattle Children?s Hospital ethics committee. About 2 months later, a surgery that included a hysterectomy, appendectomy and the removal of breast buds was performed on Ashley. She was 6 years old. Following the procedure, Ashley was given estrogen therapy for approximately 2 years to stunt her height growth.

Though a radical procedure, Ashley?s Treatment received little publicity at the time it was performed. It was not until October 2006 when Dr. Gunther and Dr. Diekema published the treatment in a medical journal that this matter began to receive worldwide media attention. In response, Ashley?s parents found a medium where they could both remain anonymous, and address questions and concerns respecting Ashley?s treatment on their own terms. Ashley?s parents started a blog. Proving everything from updated pictures of Ashley to providing a breakdown of the positive and negative emails they receive from readers, the blog serves as an opportunity for them to explain this highly controversial medical decision.

Understandably, Ashley?s Treatment is a largely contested issue between ethicists, the medical and legal profession, disability groups and families/parents of other children such as Ashley.

CNN reports:

It's been a year since the parents of a severely disabled child made public their decision to submit their daughter to a hysterectomy, breast surgery and drugs to keep the girl forever small. Today, the couple tell CNN, they believe they made the right decision -- one that could have a profound impact on the care of disabled children worldwide.

?While the "Ashley treatment" was first published in the October 2006 issue of the Archives of Pediatrics & Adolescent Medicine, it wasn't until the family posted its blog last year that a firestorm erupted in the blogosphere, with responses from "inhumane" and "perverse" -- to "walk in our shoes."

"If parents of children like Ashley believe this treatment will improve their children's quality of life, then they should be diligent and tenacious in providing it for them," her parents write. "We have a sacred duty to do what we believe is right for our children."
But in Ashley's case, what her parents thought was right wasn't legal.

In May 2007, Children's Hospital admitted it broke state law by giving Ashley a hysterectomy without a proper court review. To perform any such treatment today would require a court order, as well as review by a panel of experts in medicine and ethics and people with disabilities, says Dr. Douglas Diekema of Treuman Katz Center for Pediatric Bioethics, the consulting ethicist on Ashley's case.

?Another complicating factor -- some doctors remain adamant the treatment shouldn't be available.

"Adults can consent. But for a child, we're making decisions for them and hoping in our heart of hearts we are making the right decisions," says Dr. Nancy Murphy, chairman of the American Academy of Pediatrics Committee on Children with Disabilities.

Murphy will push for consensus among doctors at a pediatrics conference later this year, but acknowledges strong discord as critics continue to insist that keeping children small reduces them to a permanent infant-like condition, denying the basic human right to experience an adult body, adult feelings and adult relationships. But for Ashley, that may be moot.

"[This disability] shatters the reason we become parents: to watch kids grow, to be part of their lives and to launch into their own lives," says Murphy. "When you have a child with lifelong dependency, you don't get to launch your kid, and your caregiver options are limited."

But like many other people with disabilities, 43-year-old Anne Rader, who also has cerebral palsy but in a much less severe form than Ashley's, sees the treatment as dehumanizing -- and perhaps most significantly -- irrevocable.

"The parents are not seeing the potential of the child; they are seeing a baby," says Rader. "People with disabilities have to look at the potential of our lives: of available new technology, new equipment, medical advances. Things can change so quickly now."

Some ethicists, too, remain staunch in their assessment that the "Ashley treatment" is a violation of not only human dignity, but also of a physician's oath to do no harm.

"I think mutilating surgery involving removal of breast buds is indefensible under any circumstances," says Arthur Caplan, the chairman of the Department of Medical Ethics and director of the Center for Bioethics at the University of Pennsylvania. "Growth retardation is not a substitute for adequate home aides and home assistance."

Ashley's parents remain convinced what they did for Ashley is the most loving choice they could have made for their daughter and want that for other disabled children.

Yesterday, Ashley?s parents provided CNN with their first media interview since the procedure was performed in July 2004. The complete interview can be found here.

- Annie Noa Kenet, Toronto

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Full post as published by Wise Law Blog on March 13, 2008 (boomark / email).