North Star Writers Group

Unless we are the parents of an infant, most of us blissfully have no idea how consuming it is to care for a person who is totally helpless. I got a small taste of the toll it can take in the aftermath of my own recent surgery. Although I wasn’t totally dependent, I still needed a great deal of extra attention for the first few weeks, and the effort to look after me exacted a heavy price from my partner.

Most youngsters eventually become less and less reliant on their parents and others to provide for their needs. What happens, however, if a baby’s body grows into a child but the mind remains infantile? What happens when the body becomes adult in size and weight? How does the family cope?

The anonymous parents of a nine-year-old Seattle girl named Ashley have blazed a trail in this area that some would prefer never be followed. In 2004, after consulting with their physician and an ethics committee of 40 individuals from the community at large, Ashley’s mother and father requested that their daughter undergo removal of her uterus and breast buds, plus a course of hormones to keep her from growing taller and heavier.

The procedure has been dubbed “Peter Pan surgery” and has prompted a lot of criticism.

Why did they take such a drastic step? Although Ashley had a normal birth, her mental and cognitive abilities never matured beyond the age of three months. That means she is totally powerless and depends on her parents and siblings to feed her, bathe her, even to move her. If Ashley slides off a pillow, she cannot right herself without assistance.

Their side of the story is available at http://ashleytreatment.spaces.live.com/. Before judging them or decrying the surgery, read what the couple has posted. It is a thoughtful and thorough examination of their options, and is thought-provoking in addition.

Looking into the future, Ashley’s parents were uncertain about the ability of their daughter’s infantile mind to cope with a grown-up female body. They also had concerns about the impact of her adult size and weight on both her daily comfort as a helpless invalid and the ability of her family to care for her and include her in outings and other activities, which they believe help keep her engaged and stimulated.

“Furthermore, other than her mom and dad the only additional care givers entrusted to Ashley’s care are her two grandmothers, who find Ashley’s weight even more difficult to manage,” they write on the Web site. “We tried hard and found it impossible to find qualified, trustworthy and affordable care providers.”

That last sentence rings tragically true for me. The 18-year-old daughter of some close friends was recently diagnosed as bipolar, a serious mental condition. She has not yet earned a GED, in part because she is too scared to move out on her own. This young women’s parents, both mental health professionals, have looked in vain for a halfway house to give their daughter experience in independent living in a safe environment while she makes the transition to full adulthood. Nothing is available at any price.

This nation is woefully short on resources to help ordinary families care for loved ones with serious long-term conditions, like Ashley’s or the daughter of my friends. Ashley’s parents did what they felt they had to do in order to best care for her given that dismal reality. I am not sure what my friends will do to help their daughter, but they have spent dozens of years and thousands of dollars trying to help their child.

Unless and until we make it a priority to provide affordable long-term care, none of us has the right to judge how others cope with our national shortfall. After all, would we be willing to take on the burden of such care ourselves? I suspect even the sharpest of critics would, if honest, answer a resounding no.

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This is Column #CT18. Request permission to publish here.