There is something that's been in the news for the past few days that got me thinking. Most of you have probably already heard about it. The parents of a brain-damaged child made the decision to have radical surgery done on their daughter, Ashley, to prevent her from growing, a hysterectomy to keep her from having periods and removal of her breast buds so she would not develope breasts. She will, in essence, be frozen in time. She will never grow any taller than 4'9" and will unlikely ever weigh more than 90 pounds.
Initially, it seemed Mengelesque and I was appalled. It sounded like something straight out of The Third Reich but I began to look at a few more facts. In no way am I a medical ethicist and don't claim to have knowledge anywhere close to that. However, I can reason out facts when I see them.
Ashley was born with static encephalopathy. She will never have cognitive functions higher than that of a 3-month-old baby. She is unable to feed, bathe herself or be potty-trained. Her body will develope as any other body without intervention. She will require lifetime care. She is nine years old now and is expected to live a normal lifespan.
So what is the most loving thing to do for Ashley?
While hand-wringing and slippery slope arguments are presented on TV shows such as Nancy Grace and Fox News, comparing her to Terri Schiavo, the fact remains that if Ashley grows to normal height and weight, she will be confined to a bed. As her parents age, she will unlikely be able to stay home and will spend the rest of her life in a nursing home. She will have uncomfortable periods every month without any means of communicating that. She will have breasts that will make her uncomfortable.
I also don't think it's right to run the risk of having her quality of life reduced because maybe, someday, new scientific developments will come that might, maybe, cure her in the future.
The reality is here and now. If she is normal-sized, no one will be able to lift her, carry her or cuddle her. It will be harder to remove her from her bed to take her outside.
In my personal opinion, the surgeries were the best way to make it possible for Ashley to have some quality of life.
In general, I don't trust medical ethicists in a culture that values profit over people. I am the closest thing you'll likely find to a conspiracy theorist without completely crossing over to the Dark Side. Yet, I can find nothing of substance in the slippery slope argument that says "allow this one day, Soylent Green tomorrow." Even I don't believe this culture is that evil.
What I do see is that by taking these radical actions, her parents or their designated caretakers will be able to care for her longer. It will allow her to be relatively pain- and discomfort-free. It will allow her to be physically manageable. It will allow people to carry her, cuddle her, take her outside and make her comfortable and, hopefully, happy.
This time, I'm with the parents. I can't imagine any other way.
Peace,
~Chani
