Sunday, October 19, 2008

Quality of life?

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.


Aunt Nicky said...

I cannot imagine our lives without Tyler. Tyler has taught us so much! I am so glad that I have Ty as part of my life.. When you guys told me what Ty COULD HAVE wrong with him, it didn't matter.. That was my nephew and you guys made him and it wouldn't make me love him any less.. He is a gift! I love my TyTy!!! :)

ThePreemie Experiment said...

It's a tricky one for me. Before Paige was born the answer was easy. As a matter of fact, before Paige turned 3, the answer was easy.

When she was close to turning 4 I was introduced to world of older preemies and my view changed. I met older kids who were in pain, surgery after surgery, and their bodies were barely hanging on. Then came the adult preemies. The conversations with them are always the hardest for me. Mental health issues are painful for them.

I too cannot imagine my life without Paige. In 22 days we will be celebrating her first double digit birthday and I still can't believe it!

While I do acknowledge that not all outcomes are severe, after seeing both sides of the world of prematurity, I now realize that all the love in the world cannot fix the poor quality of life that some do experience.

Grandma Labrum said...

I think the decision is one you have to make with a lot of prayer and the Lord's help, both to make the decision and to live with your decision afterward. I am sure the Lord will help make a decision that He knows would be best. And as difficult as it would be, we know that sometimes His will is that the purpose of life has been accomplished. That doesn't mean it is easy to say so. In cases where the decision has been made with the Lord's influence, no one should try to second guess and wonder "what if." How comforting to have an eternal vision of life, that children can be ours forever if WE live worthly. If a decision must be made to allow that loved one (old or young) to return to a Heavenly Father who loves them, the duty is ours to live worthy to be with them again. "I didn't say it would be easy. I only said it would be worth it." We have to have the faith that He will know what should be done and live so we are worthy to receive our answers.

Rachael said...

What an amazing post. I simply cannot imagine dealing with trying to answer that question about my child.