Something had been brought up in a preemie group I am that got me thinking. A mom was posed with the question whether or not to continue care of their child after being diagnosed with a brain bleed. The parents were questioning what the "quality of life" would be for this child. They were asking for "stories" of kids with bleeds and what the outcome would be.
This is what got me thinking. What and who determines the "quality of life" for a child?
The medical dictionary defines quality of life as a patent's general well-being, including mental status, stress level, sexual function, and self-perceived health status. When a child is diagnosed with a brain bleed these "qualities" are in question.
The doctors have to give you worst case scenario. They HAVE to. I never would blame a doctor for telling us that. If they didn't and worst case scenario happened and they were not warned the doctor could be held responsible.
As a parent can we for see the future and decide who we would "handle" things? When we were given worst case scenario and the thought and option to stop care were presented ( in one way or another) we discussed wheelchairs and saying it didn't matter. As we have becoming further in the journey a wheelchair is harder for me to swallow. Could I guess that when we were discussing his future? Does that diminish is quality of life?
The answer to me is an easy one. No on can determine quality of life. Tyler has a wonderful quality of life. He is happy, healthy and has the necessities of life. He is fed, bathed ( often I might add) and clothed. He is played with, cared for and taught many things. Does he have limitations? Yes. Will he have struggles? Yes I am sure he will. Do you have limitations? I know I do.
How can you say that a child that is brain damaged doesn't have a good "quality of life" when there are babies that are born to drug addicted mothers or teenage mothers who can't take care of them. What kind of "quality" of life do they have?
I don't have all the answers. What I do know. My quality of life is better because I have Tyler in it. To me that is all that matters.