Such a horrific question might never had entered my mind if not for two people in particular, make that three, that have seered words and images in my mind. The first happened when I was a tech at Children's Hospital in Dallas. A teenage boy came in with profound disability. He was unable to communicate, walk, and mostly move at all on his own. His arms and legs were full of contractures, causing him to permanently look like a turtle on his back. He was there for a custom wheelchair seating system and I'll never forget him. I remember looking at him, watching his mom change his diaper, watching her hook his tube feeding up. He just laid on the mat and drooled. That young man impacted me more than all the professors in the world could have. All at once I loved him, pitied him, and was repulsed by him. I was disgusted at the beige goo being fed to him. But as often happens with me and severe kids, I fell in love with him. He, who could not even speak, pushed me into the profession I chose, and gave me a heart for those with special needs. I don't remember his name but his face will never leave my mind.
More recently two doctors have brought up the cost, both monetarily and emotionally, of caring for a "medically fragile, technology dependent" child. The first happened early on when we got home and I asked for more nursing hours due to being totally overwhelmed. To my complete amazement this doctor denied it, saying any more would be too taxing on the health care system and went on to explain how she must be financially responsible when making these sorts of decisions. I told her I just couldn't do this (care for Dominic and the other 3 kids) and she suggested I hire a babysitter for my other kids. Punch in the gut. This is the first time it was suggested that Dominic was not worth the cost of caring for him. In her defense, I later found out she is having to fight insurances now because they are dropping all nursing hours from kids who are vent dependent, so she feels like she can't prescribe any more than the normal, recommended amount due to this backlash from insurance companies. So really, it was insurance companies boldly putting a price on a life, not her.
Another doctor and care team we have discussed with us on multiple occasions the reality of the time that may come that we say "enough is enough." They constantly prepare us for the worst and their job is to help us plan. For instance, we need to think about the higher probability than normal kids of Dominic having a sudden cardiac arrest and his functional level dropping. The haunting reality of having to make that decision to sign advanced directives are always looming over our head. To that mind set I say "so what if his functional level drops, is he not worth all life saving efforts?" In reality, this is a decision that parents have to make everyday. I guess if and when we ever get there, we will know what to do.
Often times when we're in the ICU I think about all of what the ICU doctor's see on a daily basis. Children with awful injuries, who have gone from totally normal to virtually brain-dead mutated images of their former selves in an instant. They see kids like Dominic, only sicker than Dominic, constantly in and out of the hospital, with no apparent "value of life." I wonder what they think. Do they see certain kids, with certain severity's and wonder why the parent still keep this child alive? Do they secretly wish that child could be "put out of his misery?"
At what point do you say a life is no longer worth living? Some would say when that person no longer has "quality of life." What does that mean? Is a person with profound mental retardation who has no ability to move or speak or communicate have quality of life? Does that person ever show any sort of happiness? Does the "Turtle shell" boy I told you about have any "quality of life?" Does he bring any joy to any one's life? Does he feel joy? Does it really matter? People say all the time, referring to their unborn baby, "just as long as she's healthy." What if she isn't? Does it decrease her value as a person?
To this I say a resounding "No!" In fact, I would argue that it increases her value to society. There is no way of telling how much money has been spent on Dominic since his birth. I would guess it is up in the millions. But Dominic doesn't have a price tag. The world desperately needs people like Dominic, and my friend in a turtle shell, to show them the real worth of human life. A successful, intelligent, beautiful person does nothing to convey the innate goodness of life. We see the external, applaud their accomplishments. It feels good to be with them. On the other hand, it is uncomfortable to with people with profound disabilities if you are not used to looking past the exterior to their inner goodness. A life doesn't have a price tag. It does not have an arbitrary value where it suddenly becomes worthless. When we see these severely affected people we must look past the exterior, the deformations, the "uselessness" and see the interior life willed to then by God. Only then can we know the high purpose and profound responsibility he has given to the smallest among us.
by the way, kids don't have a problem seeing the inner goodness. That's why they're my favorite "class" of people :)