In January of 2007, a controversial treatment for severely disabled children arose. This treatment is known as the Ashley treatment, named after the young girl to first undergo this treatment.
Ashley, now 14, was born with a developmental disabilities that has left her unable to walk, speak, and with the cognition of an infant. Ashley's cognitive ability is expected to remain the same for the rest of her life. Her parents, concerned with Ashley's quality of life, devised a treatment with doctors at Seattle children's hospital.
In 2006, Ashley underwent surgery to remove her nascent breast buds and a hysterectomy in order to avoid the discomfort of fully developed breasts and menstruation. She then received high doses of estrogen to induce the closure of her growth plates and halt her growing. This treatment was developed to improve Ashley's quality of life; her small size will better enable her parents to provide her the care that she needs. Ashley is now "frozen" in the nine-year old body when she received the treatment.
Often children as severely disabled as Ashley are not easily able to be cared for and are institutionalized. Ashley's parents are hoping that this treatment will maximize the amount of time they can still care for their daughter.
Although the intentions of Ashley's parents seem pure, this treatment has aroused great controversy. The family's endocrinologist, Dr. Gunther, published an article about Ashley in the Journal of Pediatrics in October of 2006. After this publication the controversy exploded and Ashley's family was caught in the middle of it. Critics stated that the treatment was unnatural and violated Ashley's human rights and dignity, comparing this treatment to the forced sterilizations of disabled people in the past. It also unleashed the fear that this treatment would be the gateway to other procedure for parents to "modify" their children for their own convenience.
Silvia Yee, a lawyer with the Disability Rights Education & Defense Fund fears that this opens the door to medical operations which can change a person's life, questioning, "Who has the right to decide to change an individual into a different entity?"
Despite the controversy surrounding this issue, a few other parents with children similar to Ashley have sought out this treatment. There have been at least six other known incidents of children who have completed the Ashley treatment. However it is estimated that around 100 children like Ashley have received hormone therapy.
Curt Decker, director of the National Disability Rights Network, intends to publish a report this month suggesting the introduction of new laws to ban growth attenuation treatment for disabled children. Now legislation faces the difficult decision of determining the ethics of this medical procedure. On one hand, it enables disabled children to be cared for by their loved ones for a longer amount of time. While on the other hand it permanently alters a child's physical form and natural growth process, potentially compromising an individual's rights.
We just talked about this in Medical Ethics. At first, everyone was appalled by the idea of growth attenuation and the surgeries. Many students gradually began to change their minds as the discussion progressed and we considered how to prevent harm for the patient most effectively. Do you think that this treatment prevents harm? Or is it harmful in itself to volunteer a person for surgery that is not necessary?
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