The "Ashley Treatment" Was Illegal

Back in January I posted about a little girl named Ashley, who was severely disabled to the point of being an infant in the body of a 9-year-old. She can’t walk, talk, eat, or in any way interact with her environment or other people other than smiling. But she was still growing, and that would make life difficult. The larger she would grow, the harder she would be to move around.

So what did her family do about it? Most families would prepare for ‘round the clock caretakers and very regular medical checkups for the life of their child. But little Ashley’s parents didn’t stop there. They opted for something FAR more extreme. They convinced a hospital in Washington state to do something they called “growth attenuation therapy.” They gave high doses of estrogen hormones which would forever keep Ashley the size of a young child, so she would be easier to move around, include in family life, and “snuggle.” They had her breast buds surgically removed, just in case she should develop “uncomfortable” large breasts like other family members or the potential of contracting breast cancer. They removed her appendix, just in case it should go bad. And they removed Ashley’s uterus to keep her from “menstrual discomfort,” avoid the off chance of uterine cancer, and to keep her from getting pregnant in case she were raped.

Please note, for those of you who are already incensed by my post, all of the above claims and wording are from the parents’ blog, which you can read HERE. You can also find their email address there. Of course, the parents’ blog only includes statements and reactions of utmost praise for their actions.

Well, a recent finding by the Washington Protection and Advocacy System found that the Seattle Children’s Hospital had broken the law by performing the “Ashley Treatment”:

http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html

It seems there’s this silly little law that “specifically prohibits the sterilization of minors with developmental disabilities without zealous advocacy on their behalf and court approval” (quote: Mark Stroh, WPAS executive director), and the hospital did not get that court approval. In fact, as far as I can tell, the only oversight was from the hospital ethics board and a family lawyer who apparently gave them wrong advice.

The nerve of those imposing little lawmakers to step in and advocate for a child, when all her parents wanted to do was to sterilize their daughter, stunt her growth, and remove her womanhood! It’s for the child’s own good, right? Right??

I still say it’s nothing short of child abuse. Peter Pan syndrome run amok. Go ahead, disagree. I won’t delete your comments. How could I, a parent who doesn’t have a severely disabled child, possibly know what Ashley’s parents are going through? But since the operations were made public, advocacy groups for children, women, and the disabled, as well as parents of similarly-disabled children, have raised alarms at the extreme nature of the “Ashley Treatment” (ARTICLE), saying it sets a very dangerous precedent and oversteps the line of ethics. And there are plenty of examples of children with comparable severe disabilities who grew up and interacted with their families just fine, overcoming the issues as they came to them.

Too late to change Ashley back. She’ll be her parents’ “pillow angel” for life. As darling as their little girl is, and as easy as it is to care for her, I can only wonder how far the precedent could go. It makes me shiver.

Update (5/10/07): Today Ashley's father placed a video of her on YouTube.com, showing a happy Ashley on the deck of her house and in her room, and narrating it himself. Apparently I was the first one to view it, according to the hit counter. Here is the link: http://www.youtube.com/watch?v=Sd8snXy6Lg8. The only mention of the "Ashley Treatment" was a very brief note at the very end. Otherwise it was a simple video of Ashley smiling and babbling. Fairly pleasant. The only thing that freaked me out was the picture of Ashley sitting on the lap of "the Prince of Peace." You'll see what I mean…

Update (5/11/08): A statement was released by the Board of Directors for the American Association on Intellectual and Developmental Disabilities condemning the use of this growth attenuation “therapy”: http://www.aamr.org/Policies/board_positions/growth.shtml. Here is their concluding paragraph:

“It seems painfully obvious that medical practice for an individual can rapidly degenerate if the anxieties of the parents regarding as yet unclear future issues replace the medical best interest of the child as the primary focus, even with the noblest of intentions of all parties involved. We see an enormous potential for abuse here, and given the well-documented history of mistreatment, neglect and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could, in 2006, be a topic for serious debate in this forum. As described by Gunther and Diekema, it distorts the concept of treatment and devalues the patient’s personhood. While references to slippery slopes should be made with great care, we believe that this practice, if judged acceptable, will open a doorway leading to great tragedy. This door is better left closed.”