Critical Congenital Heart Disease Screening Saving Lives One Infant at a Time Christina Rust, MSN, RN

Heart disease caused by heart defects Due to structural malformation of the heart that forms in the early stages of cardiac development Normal flow of blood through the heart is disrupted Most common birth defect Congenital Heart Disease (CHD)

Affects 8 in every 1,000 live births Approximately 40,000 U.S. births/ year Leading cause of infant death in the developing world Screening provides significant opportunity to reduce infant mortality and morbidity (MMWR, 2013)

Heart disease caused by 7 types of cyanotic heart defects Can be fatal in infants if not detected and treated early Newborn physical assessment does not always identify CCHD – 41,494 deaths related to CCHD Over 50% of deaths were infants < 12 months of age (CDC, 2011) Critical Congenital Heart Defects (CCHD)

7 Critical Congenital Heart Defects (CCHD) Hypoplastic Left Heart Syndrome (HLHS) Tetrology of Fallot Truncus Arteriosis (TA) Transposition of the Great Arteries (TGA) Pulmonary Atresia Tricuspid Atresia Total Anomalous Pulmonary Venous Return (TAPVR)

Screening Tool for CCHD Simple, painless, non-invasive pulse oximetry application Estimates percent of hemoglobin in the blood that is saturated with oxygen Pulse oximetry reading taken on the right hand and one foot Reading values compared to standardized algorithm (AAP and AHA)

Follow-up for CCHD Infants with positive screen transferred to NICU Placed on ECG monitoring Assessed by NNP/Neonatologist Echocardiogram completed Consultation with local children’s hospial Pediatric cardiologist

Tracking Birth Defects No federal population based system to track CCHD in children and adults States track birth defects through birth records data systems CDC received a grant in 2012 to establish a congenital heart disease defects database in the U.S. Currently trialing in Massachusetts, New York, and Atlanta, Ga.

CCHD Prevention Prevention research requires creation of a national database of data - Geographic - Demographic - Genetic - Environmental - Other factors