This is not an insurance issue, but we have talked before about ethics. Recently, there have been news stories about a severely disabled girl whose parents decided on a radical treatment: through the use of surgery and chemicals, they have arrested her physical growth at about age nine.
As the parent of two healthy, active (sometime too active) daughters, I am at a loss as to how to view this: on the one hand, they are her parents, who have chosen a course of treatment for their handicapped daughter. On the other, this seems to be such a draconian regimen that I am finding it difficult not to be appalled.
Some time ago, I discovered a blog called Dream Mom, written by the mother of a similarly handicapped child (although her son is now a teenager). She has written a series of profound and insightful posts, and was recently interviewed by CNN.
Hers (and her son's) is not a pretty story, but it is moving and hopeful. I highly recommend reading her work. To get you started, here are a few posts which address this particular issue:
That last one is long (it clocks in at almost 5,000 words). Trust me, it's worth it.