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.