Too long to be comments....

I started to write a response to Magdalene's post over at her place about The Ashley Treatment, and as you can see, it got totally out of hand. So here is my "comment," moved over to my place.

I've quickly read the Slate article by William Saleten, but read the website of the family of the child very carefully. My husband (who is disabled and in a wheelchair) and I discussed it at length. I have to say that if there is any taking sides, I am on the side of the parents in this one. Their motivation, as articulated by them, and as was understood by the ethics board at the hospital, was the comfort, health and safety of their child.

Even if "we did it for her" is not true, and they really did it for the good of themselves, I am still not sure that's such a bad thing. In a family system, the good of all must be balanced. So, in this case, something that is good for the parents ( having a smaller child who is easier to lift), it is also good for the child (being able to be really involved in the family for her life).

Medical intervention is an interesting problem, as exemplified by my own family. My son, for example, was born early, and his lungs had not quite caught up with his otherwise large and healthy body. As a direct result, he now has asthma, which requires frequent treatment by expensive and somewhat unpredictable medications. When he was younger, someone commented to me about the large numbers of kids with asthma these days, and speculated about environmental causes. "And," I added "used to be that those babies who were likely to get asthma, like Eli, would die before they had a chance to grow up." Kind of takes your breath away, (not to be too punny about something really serious.)

No one has suggested to us that we really shouldn't have used the incubators in the hospital those first weeks, no one suggests that giving him personality-altering steroids is an affront to his dignity, no one begrudges us our midnight calls to 911, even the paramedics who invariably arrive after the crisis has passed and he's breathing normally again. He cannot make those decisions on his own, I must make them for him. Decisions about what kinds of care to provide for him are not easy, but we make them every day on his behalf, with the fervent hope that the medicines that give him breath today are not going to be discovered to give him cancer twenty years down the line. (My, this is morbid, but you see the point, right?)

And dont even get me started about my husband. Every day we make ethical decisions together about how much to alter his "natural" state (which would be totally bedridden without the assistive devices he uses - wheelchair, transfer board, wife's strong back...). It may be his natural state to be flat on his back, but no one begrudges us the money and time spent pulling him up every day and into a job he could never have done and a life he would never have had if he'd been kept "natural."

So to get back to the family who decided to operate on their child, to keep her small and to keep her from menstrating. This wasn't to keep her a doll or a pet, it was to keep her at home, a part of the family. Was it the right decision? Like the steroids for Eli, only time will tell. Is it natural? Sure it isn't. But is it natural for you to fly (to FLY!) in an airplane to Tennessee to visit your great-aunt Tillie who used to ride a mule to school? Is it natural for me to write this to you now, people I will never see or know, and assume that you will receive it by some voodoo wireless magic I don't even understand?

Maybe instead of being all brave-new-worldy and snarky, William Saleten (who I bet drove a car to work today, speaking of unnatural) could have offered a word of compassion and hope to a family that made a big decision, placing a big bet on a future they could not see. NOW THAT would have been the natural thing to do.