Of all the things that a parent wants to hear surrounding the birth of a child, “your child may have a heart defect” is not one of them. According to the Centers for Disease Control and Prevention, each year about 1% or 40,000 births are affected by some form of congenital (meaning born with) heart defect or disease.
Working in the arena of cardiovascular medicine for upwards of 3 years and critical care medicine for over 10 years, I have seen firsthand the shock, devastation and amazing courage families undergo when dealing with a congenital heart defect. All too often parents are met by a team of skilled physicians, given devastating news, and then left in a helpless state of trying to figure out acronyms like HLHS, TOF, and ASD. Even if the parent is a nurse or physician, the news of a congenital heart defect is still heart wrenching, perhaps even more so for this population because there is little or nothing you can do except hope and pray for a positive outcome -- the same as any parent. This article is dedicated to all parents and children living with congenital heart disease.
First, let’s break down some of the more common acronyms used in cardiovascular medicine:
- HLHS: Hypoplastic Left Heart Syndrome. This is characterized by a smaller than normal and functionally inadequate left ventricle of the heart. Within the first few hours of life the newborn will be cyanotic (bluish) in color, lethargic, with a poor suck or poor feeding and rapid breathing (when they breathe in the stomach appears to be inverted or sunk in).