Improving the Health of People Across the Lifespan: NCBDDD’s Congenital Heart Defects Tracking and Research

Download and print this page pdf icon[PDF – 2 MB, 1 page]

NCBDDD is committed to helping individuals with congenital heart defects in each phase of life, through public health tracking, research, prevention, and intervention.

Mother kissing her baby's smiling face

What’s The Problem?

Congenital heart defects are common, costly, and critical conditions that affect people throughout their lives.

  • Every 15 minutes, a baby is born with a congenital heart defect in the United States.
  • In 2013, hospital costs exceeded $6 billion to care for children with congenital heart defects.
  • More than 2.4 million U.S. children and adults are living with congenital heart defects.
  • Over 1 in 6 adults with a congenital heart defect have physical, educational, or occupational limitations.
Five diverse young adults taking a group picture, smiling at the camera

What’s the Solution?

NCBDDD is learning more about congenital heart defects through public health tracking and research to inform interventions that could improve the lives of those living with these conditions.

  • NCBDDD has worked with programs to evaluate and conduct newborn screening for critical congenital heart defects and conducted a cost-effectiveness analysis. NCBDDD scientists estimate that nationwide critical congenital heart defect screening could save at least 120 babies each year.
  • NCBDDD funds 14 state programs to track birth defects, including congenital heart defects. Pooling data across states helps us see the national picture. For example, we know that more than 1,600 U.S. babies are born with tetralogy of Fallot (a critical congenital heart defect) each year.
  • NCBDDD funds several research centers across the nation to help understand the causes of birth defects, including congenital heart defects. For example, we found a 2-fold increased risk for hypoplastic left heart syndrome in babies of mothers who took opioid pain medications early in pregnancy.
  • NCBDDD expanded tracking to look at health issues, racial/ethnic differences, and needs for people of all ages living with congenital heart defects.
  • NCBDDD conducted CH STRONG, a survey of over 1,600 adults living with congenital heart defects.
Diverse kids sitting and laughing together

While we have learned a lot, much work remains. For more information on congenital heart defects, visit