Reflections on having a child with CHD

Tonight I am feeling a little reflective. I think every ones lives change when they have a child, but I think our lives changed even more when we found out that our child had a Congenital Heart Disease. It was like we were children ourselves who were forced to face the hard reality that our child may or may not grow up to be an adult. He may never get married or have children himself. While Tetrology of Fallot is one of the most repairable of the Congenital Heart Diseases, with every procedure comes more risk. There isn't a moment that goes by that we do not worry if he is OK. We ask each other, "does he look blue to you?" Then wonder if we should call the pediatrician to get his oxygen levels tested. His heart will never be like yours or mine. It will always be a repaired heart. His heart leaks and someday he will need another surgery to replace his valve.

Tonight, I found out another heart baby has passed away. My heart is aching for her family. http://oliviahuelsbergen.blogspot.com/

While I have a strong testimony in my Savior Jesus Christ and his atonement, at times I am scared and angry. Angry that while Congenital Heart Disease is the number #1 birth defect it receives very little in terms of research dollars. How can we not pay attention to something that affects 1/100 children? One article that was written in the WSJ last week said that doctors often don't have the equipment or tools to treat children without a little guess work because the procedures and tools were not designed for them, but rather for adults. The are also left guessing on the amount of medication given to these patients. After our son had his surgery, I had to drive to several pharmacies because ours didn't carry that medication. While I am grateful for the American Heart Association they spend the majority of their budget studding preventive measures for adults. You read that right preventive! So that you and I can live a longer life, but children aren't even given that same chance. We can prevent heart disease by the choices we make, but congenital is something that you are born with.

Today hug your babies a little closer. Tonight pray that we can end the fighting. May we start putting our energies into finding a cure for Congenital Heart Disease.