Forever Young

If you have young children at home, don't you occasionally find yourself wishing they could stay that way forever? I do. I have two toddlers, and it's one of my greatest pleasures to come home after a hard day at the lab bench, grab them up into my arms, and cuddle. Oh, how I'm trying to emblazon those moments into my brain so that I'll be able to recall them when my kids are teenagers and angry at me because I haven't bought them that cell phone / PDA / MP3 player brain implant they want so badly (I'm extrapolating a dozen years into the future – who knows?).

Now imagine if, by some bizarro twist in bioethics, you were certain it was in your child's best interest for her to remain small forever and you were able to convince doctors to do something to make it happen. Yes, purposely stunt her growth for the rest of her life.

Well, a couple in Chicago did it to their 9-year old girl:
http://www.cnn.com/2007/HEALTH/conditions/01/04/ashley.treatment.ap/index.html

Little Ashley, age 9, is severely mentally and physically handicapped, unable even to roll over much less walk or talk, but she responds to others, including smiling. Her parents decided that their "pillow angel" (as they call her) will be more manageable if she remains 4-foot-5 for the rest of her life, thus easier to involve in family activities, be moved around, prevent bedsores, and cuddle. To achieve this, they talked some doctors in Seattle into putting her through an intensive hormone therapy. If things go as planned, she'll never go through puberty and will never grow taller. It's already working.

Why, she's a regular Peter Pan. "All you need is trust and a little bit of pixie dust!"

But they didn't stop there. They also removed her uterus to save her from potential pregnancy due to rape and from the discomfort of menstruation. They surgically removed her breast tissue to save her from the discomfort of large breasts and the possibility of breast cancer. And they removed her appendix, just in case she might have appendicitis and not be able to express it. Here is her parents' blog site explaining their side of the story.

Are you horrified yet? I am. I wrote a post not long ago about mad scientists. I'd have to put those doctors on that list. Sure, little Ashley will be easier to care for and incorporate into the parents' busy lives, and that might have some benefit to the girl, but what if some miracle treatment is discovered in the next few years to help Ashley develop more advanced mental or physical ability? Stem cell therapy, for instance. What then? Will their little Peter Pan curse them for trapping her adult mind in a 9-year-old's physique? Will she resent them for sterilizing her, eugenics-style? And what sort of diabolical precedent does this set for other handicapped children?

Or do you sympathize with the parents and their belief that their "pillow angel" is better cared for if she remains in a childlike form?

I think I'll take a little extra time today to cuddle with my kids when I get home.

"Come with me, where dreams are born, and time is never planned. Just think of happy things, and your heart will fly on wings, forever, in Never Never Land."

UPDATE (1/11/07): Perhaps the greatest critique of this blog post, and other blogs, on this subject by supporters of Ashley's parents boils down to "You aren't in their situation, so how could you possibly understand? Thus you should support the parents." Well, it seems plenty of disabled people, their parents, and feminists who HAVE been in that situation support my view that "the Ashley Treatment" is inhumane and that the doctors who did the surgeries should be strung up for ethics violations. See this article:
http://www.cnn.com/2007/HEALTH/01/11/ashley.outcry/index.html

UPDATE (5/8/07): The "Ashley Treatment" was illegal according to Washington law. See my recent post: http://angrylabrat.blogspot.com/2007/05/ashley-treatment-was-illegal.html.