One out of every 100 babies is born with a congenital heart defect. That is 300 a year in Oregon. Congenital heart defects are the largest cause of pre-birth and newborn mortality. Heart defects are the most common birth defect. Since the 1950s doctors have had the ability to surgically repair congenital heart defects.
Surgical techniques continue to improve and survival rates continue to increase.
But even so, a baby born with a congenital heart defect faces both an immediate medical crisis and serious long term health issues. Congenital heart defects are diagnosed most often during pregnancy or just after birth. Parents who have experienced the heartbreaking and traumatic event of being told that their baby has a heart defect report initial denial and confusion. Often they are not able to absorb information provided by doctors. Nurses may not be trained in congenital heart defects or may not have updated information.