Disabled Child's Parents Defend Growth-Retarding Therapy

SEATTLE, Jan. 5 -- Parents of a severely cognitively and physically disabled girl have publicly defended their decision to retard her growth through the use of hormonal therapy and surgery, saying they were acting out of love and compassion.

The parents said they were thinking only of the best interests of the child, now nine years old. She has static encephalopathy, with marked global developmental deficits, and is reported to be non-ambulatory, with the cognitive abilities of a three-month-old child, and no hope for improvement.

The parents call the girl, named Ashley, their "Pillow Angel," because she stays wherever they place her, most often on a pillow.

A story about the child and her parents' decision to subject her to high-dose estrogen, a prophylactic hysterectomy, and breast tissue reduction surgery (to prevent familial breast cancer) was published in the Los Angles Times on Jan. 2. It sparked international headlines and reactions ranging from sympathy for the parents to outrage at what some see as "mutilation" in order to make the caregiver's lives more convenient.

The so-called "Ashley treatment" was described by pediatric endocrinologist Daniel F. Gunther, M.D., M.A., and ethicist Douglas S. Diekema, M.D., M.P.H., both of the Children's Hospital and Regional Medical Center in Seattle, in the October issue of the Archives of Pediatrics & Adolescent Medicine.

The basic premise is that high-dose estrogen can inhibit growth and advance maturation of epiphyseal growth plates in order to keep the child's stature short.

"Many parents would like to continue caring for their child with special needs at home but find it difficult to do so as the child increases in size," they wrote. "If growth could be permanently arrested while the child was still small, both child and parent would likely benefit because this would facilitate the option of continued care in the home."

Her physicians estimate that the treatment will keep Ashley's height at around 4 feet, 5 inches, and her weight at approximately 34 kg (75 pounds), rather than the predicted adult height and weight, without intervention, of five feet, six inches and 57 kg (125 pounds).

Photos of the child are available for viewing on the parents' blog, at http://ashleytreatment.spaces.live.com/blog/.

In the blog, the parents answer critics' charges and explain in detail their decision to stop her growth and to subject her to hysterectomy, and to surgery to remove her breast buds.

"Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings," they said.

They further stated that "the 'Ashley Treatment' is intended to improve our daughter's quality of life and not to convenience her caregivers," and that "providing our daughter with this treatment was an easy decision since the benefits by far outweigh the risk and short term discomfort associated with the surgery."

Dr. Diekema, who met with Ashley's parents, said that the child has not suffered harm from the surgery, and that he is convinced that her parents lover her and are acting in her best interests.

Some medical ethicists have criticized the parents' decision, saying that while it may make her care more manageable, it presents a troubling precedent for the treatment of severely disabled children. Others have pointed out that it highlights the inadequacies of care for people with severe disabilities.

In an editorial accompanying the case report in the Archives of Pediatrics & Adolescent Medicine, Jeffrey P. Brosco, M.D., Ph.D., and Chris Feudtner, M.D., Ph.D., M.P.H., of the department of pediatrics at the University of Miami, applauded Dr. Gunther and Dr. Diekema for framing the issue, but said the efforts were ill-advised.

"American society in general, and the medical community in particular, has traditionally sought simple technical fixes for seemingly intractable problems, which often combine biological and social aspects of human existence," the editorialists wrote. "In the end, what might be most distressing about attempts to shorten children with profound disabilities and thus lighten the load on their parents is not only that it might not work or cause undesired adverse effects or be misused," they wrote.

"No, more distressing is how this solution fails to situate the plight of these parents, struggling to care for their children, in the larger context of a society failure to provide adequate social support in this most admirable of undertakings."

But others, such as Lainie Ross, M.D, Ph.D. a professor of pediatrics and associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago, say that decision must ultimately be viewed in the light of the parents' choices.

"I think that the parents were trying to do what is best for their child," Dr. Ross said in an interview. "We have to remember that this is a child who is so severely cognitively disabled, who could never benefit from increased height because she never stands and will never be able to stand or sit up. The fact that they had to remove her uterus, that's something she could also never benefit from as she could never engage in sexual intercourse and never voluntarily become a parent."

"All the things that the parents did were to allow Ashley to stay small and therefore be able to have greater mobility lying down, as well as to make it so that she could live at home and that they could care for her," she said. "These are loving parents acting in her best interests, and we should respect that."

At the same time, Dr. Ross warned that decisions about Ashley's care were made entirely within the context of a single family.

"It would be very different," she said, "if the state said we want all disabled children to be small so that they're easy to take care of. That would be a very different story and that would be wrong."