Wednesday, February 14, 2007
It is one of those organs that we give little thought to. We probably think about it less than our stomachs and intestines--we get constant reminders from those organs when food goes and remains come out. But we probably think about it more than, say, our livers or our pancreas. And probably the main reason we think about it--when we do think about it--is because we hear that we are supposed to exercise to keep it healthy and we are supposed to eat a healthy diet so that its connectors don't get clogged. But other than that, our heart is one of those things that we take for granted. I always did, anyway.
That is until my son was born.
In addition to being Valentine's Day, February 14 is also Congenital Heart Defects Awareness Day. And it was just one year ago that we were just a few weeks from my son's third open-heart surgery. He was born with a complex heart defect--a single ventricle heart with dextrocardia, heterotaxy, TAPVR, and asplenia. In common terms, that means that instead of having four chambers, his heart has only one. It is also on the wrong side of his chest, and many of his organs are in the wrong place. As part of "complex" condition, he was also born without a spleen, which is very important organ for fighting infections (who knew?). There is no fix for his heart. Rather, a series of surgeries have created a way for his blood to move oxygen around his body.
Three open-heart operations, several hospitalizations, and a couple of scares later, we are not done dealing with heart-related issues. Instead, we are nervously awaiting more bad news. We need to figure out why (WHY??!!) there is more fluid under his lungs. This is likely a complication from his last surgery that was never resolved. In the next several weeks, he'll have a cardiac MRI, several blood tests, and probably another heart catheterization to try (once and for all) to identify this fluid's source and to fix the problem.
Really, for kids with heart defects as complicated as my son's there is no fix. There are ways to stabilize him. There are ways to help him life a normal life for a while. But his life, and our lives will never be normal. Our lives are a series of wait-and-sees with ups and downs. For now, we keep our fingers crossed that the tests do not reveal anything significant that send us back to the OR. We wait and hope that all he needs is more time and medication.
What can you do? Father in Chief lists a variety of ways you can help.