Ashley Treatment

Editor-In-Chief: C. Michael Gibson, M.S., M.D. [1]

Overview

The Ashley Treatment refers to a controversial set of medical procedures undergone by a Seattle child, "Ashley X". Ashley, born in 1997, was a child with severe developmental disabilities due to static encephalopathy of unknown etiology. The treatment included growth attenuation via hormonal treatments; hysterectomy, bilateral mastectomy, and appendectomy.

The principal purpose of the treatments was to prevent secondary sexual development and growth to adult size. The combination of elective medical and surgical treatments attracted much public comment and ethical analysis in early 2007, both supportive and condemning.

Background

Ashley was born with a severe brain impairment of unknown cause, termed a "static encephalopathy" because it has not worsened. Although she sleeps and awakens, and breathes on her own, she is unable to raise her head, sit up, hold a toy, walk, or talk, and must be tube-fed. Nonetheless, she is alert and responsive to her environment, particularly enjoying the music of Andrea Bocelli. Her parents have nicknamed Ashley "Pillow Angel," because she always remains where she is placed, which is usually on a pillow.

In 2004 when Ashley was six and a half years old, she began to show signs of puberty and her parents and doctors began to anticipate a variety of issues common in children with severe neurological impairments. As these children grow larger, it takes more strength to move them and provide basic bodily care, raising the risk of pressure sores from immobility. Precocious puberty is common in children with various forms of severe brain damage. The early appearance of secondary sexual characteristics is often distressing to parents and caretakers. Many parents of severely disabled children explore possible ways to avoid having to deal with menstruation and fertility in a diapered child. A variety of treatments have been used over the last several decades to deal with these issues.

In July 2004, Ashley had a hysterectomy (to prevent menstruation) and surgical removal of her nascent breast buds (to prevent development). She also underwent an appendectomy. The surgery was performed at Seattle's Children's Hospital and Regional Medical Center. In addition, she recently completed estrogen therapy to permanently stunt her growth.

Ashley's story first broke in October 2006, in the Archives of Pediatrics & Adolescent Medicine. In January 2007, her parents, who wish to remain anonymous, set up a blog to explain their reasoning for their decision.

Arguments for the Treatment

The parents state that they sought such treatment for the best interests of their daughter, namely, to enable them to personally continue constant care for her; to reduce the risk of bedsores; to avoid the discomfort that may be associated with menstruation; to prevent pregnancy; to avoid the discomfort of large breasts, which run in Ashley's family; to prevent breast cancer; to prevent appendicitis which occurs in 5% of the population and which would be difficult to diagnose in Ashley as she would be unable to communicate the symptoms. They also believe that without developing secondary sexual characteristics, Ashley will be less vulnerable to sexual abuse.

Reactions

In the United States, Arthur Caplan, of the University of Pennsylvania's Center for Bioethics, has criticized the Ashley Treatment in an MSNBC editorial, arguing that it is "a pharmacological solution for a social failure--the fact that American society does not do what it should to help severely disabled children and their families."

Disability rights advocates, including Not Dead Yet and Feminist Response in Disability Activism (FRIDA), called the treatment "invasive medical experimentation", "mutilation", "desexualization", and a violation of Ashley's human rights. FRIDA called on the American Medical Association to condemn the Ashley Treatment

In the United Kingdom, the British Medical Association stated, "If a similar case occurred in the UK, we believe it would go to court and whatever decision was ruled would be in the best interests of the child." Dr. Peter Hindmarsh, Professor of Paediatric Endocrinology at Great Ormond Street Hospital was troubled by the treatment decision being taken by a hospital ethics committee. "'I am not sure the ethics committee was the right place to decide,' he said, adding that it was not clear who represented the child's interests when it went before the committee."

In Canada ethicist Arthur Schafer's nationwide opinion piece defending the operation as justifiable in consideration of Ashley's comfort served as a catalyst for criticism from disability rights activists such as Dave Hingsburger of the York Central Hospital and Keenan Wellar from the LiveWorkPlay self-advocacy organization. In a rebuttal, Wellar attacked the notion that Ashley's limited mental abilities justified the decisions made on her behalf: "Infants have human rights even though they can't speak for themselves. Why should Ashley have received any less consideration?"

On May 8,2007, an investigative report, done by The Washington Protection and Advocacy System, criticized the hospital that performed this controversial procedure for violating Washington State law.

The doctor that performed the surgery (Dr. Daniel F. Gunther) committed suicide September 30th, 2007.

External Links

• Ashley's Parents' Blog
• A Disability Community's Response to Ashley's Treatment
• AMA Study
• Pillow Angel Ethics
• Surgery on girl raises ethical questions
• Surgery to stunt girl’s growth sparks debate
• Not Dead Yet Statement on "Growth Attenuation" Experimentation
• Should severely disabled kids be kept small?
• Helping Families Care for the Helpless by George Dvorsky
• UK charity campaigns for childrens' rights