Posted by: Jennifer | January 4, 2007

you never know until you know

A Seattle family is finding itself in the middle of a medical ethics firestorm because of their decision to stunt the growth of their severely disabled daughter.

The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.

Along with hormone doses to limit her growth, Ashley’s parents also opted for surgery to block breast growth and had her uterus and appendix removed.

[…]Ashley’s parents say that because she will remain the weight of a child, it will be easier for them to move her around, bathe her and involve her in family activities – movement that will benefit her physical and mental well-being.

[…]Ashley has static encephalopathy, a rare brain condition which will not improve. Her parents call her “Pillow Angel”, because she does not move from wherever they put her, usually on a pillow.

The couple decided three years ago to take steps to minimize their daughter’s adult height and weight.

It would be very easy for me to sit here in front of my computer and say that I am horrified at the thought of anyone using medical treatment to stunt the growth of their child. But then again, I’m also not in the position of having a little girl who will never develop mentally beyond a three-month-old. I can see how this would benefit Ashley. Her parents will be able to care for her better (let’s face it — it’s easier to bathe a small child rather than an adult), and not having to worry about a period will definitely make her more comfortable. It will also be easier to leave her alone with strangers when they know that they don’t have to worry about the sick minds that exist out there, and the people who would take advantage of Ashley for their own gratification.

We could also look at it from this angle: let’s say that the treatment ended and Ashley’s body was allowed to grow normally. Would Ashley be better off? What I mean to say is, would she benefit from having the body and functions of an adult? Would her parents and her doctors be able to care for her in the same way? Sadly, Ashley herself won’t notice any difference.

If this is what these people have to do in order to make Ashley’s life easier, and to make their own lives easier, then who are we to judge them? Let’s leave them to live their lives the best that they can, and instead let’s pay more attention to making more medical research possible so that in the future we will be able to cure children like Ashley, rather than simply treating them.

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