Surgery To Keep Disabled Children Small On the Rise
A huge controversy arose in 2007 after details merged about the “Ashley treatment,” a procedure in which doctors used hormones and surgery to prevent Ashley, a severely disabled girl who was unable to walk or talk, from growing. Ashley is now about 14 years old; her parents, who have called her the “pillow angel,” had asked doctors at the Seattle Children’s Hospital to perform the procedures out of the belief that keeping her small would be the best way to ensure her quality of life. Doctors removed Ashley’s uterus and breast buds and gave her high doses of estrogen to cause the closure of the growth plates in her bones; they wrote about the “treatment” in the October 2006 issue of the Archives of Pediatrics & Adolescent Medicine.
Growth Attenuation Treatment On the Rise
In May of 2007, the Seattle Children’s Hospital and Regional Medical Center admitted that it had broken state law by allowing the surgery to occur. Despite this and despite a May 2007 38-page report by the Washington Protection & Advocacy System contending that Ashley’s rights had been violated, the use of such growth attenuation treatment seems to be on the rise. In a recent article, the Guardian says that it has been in contact with two families who have had their children undergo the procedure, a family in a European country with an adopted son from Vietnam, “Tom” (not his real name), who has severe cerebral palsy and epilepsy and cannot sit, talk, walk or eat, and a now-14-year-old girl in the upper Midwest, “Erica” (also not her real name), on whom doctors at the University of Minnesota performed procedures similar to those used on Ashley.
The Guardian says that it has learned of a total of at least a dozen families who have carried out such growth attenuation procedures or are in the process of doing so and that there may be more than 100.
Disability rights activists, including parents of children with disabilities (myself included) expressed simple outrage at the procedure. As the parent of a severely autistic teenage son who can talk a little, is very athletic and almost six feet tall (i.e., almost a foot taller than me), I can understand the fears of Ashley’s parents about how to address the needs of a child with severe disabilities growing into adult with the same. But rather than physically disabling a child further, we have sought to teach and support Charlie as he has matured from a child to a teenager and into adulthood. To cut off his growth at some point that we think best seems simply to be limiting his possibilities — seems wrong, to put it bluntly. Charlie has often surprised us by revealing how much more he can do as he gets older.
Were Ashley’s Civil Rights — and Human Rights — Violated?
Curt Decker, director of the National Disability Rights Network, is preparing a report (due out in April) to call on Congress to ban growth attenuation treatment for disabled children on the basis that it violates their civil rights.
In an email exchange with the Guardian, Ashley’s father has written that outlawing growth attenuation treatment will only harm children with disabilities and their families, so that the “treatment becomes exclusive to the wealthy and powerful.” He and Ashley’s mother have continued to defend the treatment as improving her quality of life and maintaining her dignity.
Disability rights activists have argued that they have done precisely the opposite. Using medical procedures to keep an individual in a certain physical state — small and childlike, in this case — recalls the practice of binding the feet of little girls in Ch’ing Dynasty China. Whose “quality of life,” not to mention “convenience,” was the “Ashley treatment” performed for?
Related Care2 Coverage
Photo of Ashley on December 2011 from Ashley's blog "dedicated for the wellbeing of Pillow Angels, prepared by her parents"