Critical Congenital Heart Disease Screening

Saving Lives One Infant at a TimeChristina 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)

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• 1999-2006 – 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