Prepare for the worst, hope for the best or affect the outcome?

June 28, 2011

sickle cell

I choose to affect the outcome. On any given day I have no idea how much what I do here at Madison Holland Foundation will affect the outcome for sickle cell patients and their families, but I promise to keep trying. I’d rather do something than do nothing. I’d rather know than not know. Information or knowledge if you will, is power. There’s nothing more frustrating than not knowing and not knowing the right questions to ask because you don’t know. When presented with an unfamiliar but pressing situation, there’s nothing worse than not having ALL the information and facts relevant to make the best informed decision. Have you ever been to a doctor’s appointment where you were given new information about your case and the doctor tells you what he or she thinks is most important? And, it’s only after researching it at home online that you realize you have more questions and there’s no one around to ask. You start thinking, “I should have asked this… Or, I should have asked that…. Or, Why didn’t the doctor tell me that?” And, by the next appointment you’re given more news or results and the same thing happens all over again. I hate that. Affecting the outcome starts with knowledge. So, do your own research. Know what you don’t know. Know what questions to ask.

With good intentions and other patients waiting, doctors give us the quick and dirty and expect us to trust them to make the best decisions for our children. Here is where we hope for the best. We trust they don’t forget to tell us everything or leave something important out. I trust my daughters doctors and I thank God for them. But, she is my child, my love, my life and my responsibility. My decisions regarding her will not be strictly scientific. I realize what her doctor tells me isn’t all there is. The scientific facts and diagnosis will only add to all I know about her. I know what motivates her, what deflates her, what scares and defeats her and what makes her want to fight back. Her doctors do not. So, while I trust them to make the best decision for sickle cell patients, I know my child and each child is different. That makes me the best equipped to make the most informed decision.

Prepare for the worst. Doctors forget that each parent is different. Some parents don’t want to know the negative potential outcomes, some do. I realize it is easier to treat everyone the same, but it is not the most sensitive route to take is it? Treating every parent the same is essentially giving us a number. I wish doctors would stop, look us in the eyes and try to hear what we are saying. Time after time I hear patients and their advocates (parents and other loved ones) complain that doctors and hospital staff just don’t listen. It seems they are all in too big of a rush. We don’t like being treated like our thoughts, feelings and opinions don’t matter. If there is a way to prepare for serious illness or death, and I’m not sure there is, I’d have to say information and knowledge is it. Find out as much as you can so that you’re not blind sided when things don’t turn out the way you’d hoped.

I have told Madi’s doctors repeatedly, “Tell me everything.” but they still don’t. They believe they know what’s best for me and my family. So, when I want to know more, I ask for a second opinion from another doctor or I look it up on-line. As a result some doctors over the years have been offended or felt threatened. Still, my first priority is my child.

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