Definition
Congenital Heart Disease (CHD) refers to structural abnormalities of the heart or the great vessels that are present at birth. These defects can affect the walls, valves, arteries, or veins of the heart and may range from mild conditions that require little or no treatment to complex malformations that need early surgical or catheter-based interventions.
Below are a list of common defects. While each of these defects occurs with its own frequency, many children with CHD may have more than one defect. In the most complex cases—like Luna’s—the child has a combination of several abnormalities. Luna’s combination is extraordinarily rare and represents one of the most challenging forms of CHD, occurring in far fewer cases than the more common isolated defects. You can read about Luna’s specific diagnosis and how she’s overcoming it here.
For parents, caregivers, and healthcare providers, understanding these definitions and statistics is crucial. If you are looking for more detailed information or the latest research, reputable sources we provide links at the bottom of this page. We’re also providing a list of the Hospitals that are considered the leaders in CHD intervention in Babies. Keep in mind that depending on the route you take you may not need to leave your local hospital. In Miami, there is a great team and surgeon at Niclaus Children’s Hospital that has a phenomenal record on successful Norwood surgeries. While we were almost certain we would go to Boston for subsequent surgeries it made much more sense to have the first one locally allowing Dunia to deliver Luna at home, and endure our first prolonged hospital stay just 30 minutes from our house.
Prevalence
Overall CHD Prevalence
CHD affects approximately 1% of live births (about 8–10 per 1,000 births worldwide). In the United States, this is roughly 40,000 new cases each year.
Complex Combinations
Although many babies with CHD have a single defect, it is not uncommon for them to have a combination of issues. The complex combination described here is exceptionally rare—less than 1% of CHD cases—with an overall occurrence estimated around 1 in 10,000 to 1 in 20,000 live births or even fewer.
Common Types of Congenital Heart Defects
For context, here are some of the more common types of CHD, along with their approximate frequencies among CHD cases:
Ventricular Septal Defect (VSD)
Frequency: About 30–40% of CHD cases.
Overview: A hole in the wall (septum) separating the two lower chambers (ventricles) of the heart.
Atrial Septal Defect (ASD)
Frequency: Approximately 10–15% of CHD cases.
Overview: An opening in the wall that separates the two upper chambers (atria).
Patent Ductus Arteriosus (PDA):
Frequency: Roughly 5–10% of CHD cases.
Overview: A condition where the ductus arteriosus (a vessel connecting the aorta and pulmonary artery during fetal development) fails to close after birth.
Tetralogy of Fallot (TOF):
Frequency: Around 5–8% of CHD cases.
Overview: A combination of four heart defects that together affect blood flow through the heart
Transposition of the Great Arteries (TGA):
Frequency: Approximately 5% of CHD cases.
Overview: A condition in which the positions of the aorta and pulmonary artery are reversed, leading to problems with oxygenated blood circulation.
Coarctation of the
Aorta:
Frequency: Occurs in about 5–8% of CHD cases.
Overview: A narrowing of the aorta that can cause high blood pressure and restricted blood flow to the body.
Hypoplastic Left Heart Syndrome (HLHS):
Frequency: Seen in roughly 1–3% of CHD cases.
Overview: A severe defect where the left side of the heart is underdeveloped, typically requiring multiple surgeries soon after birth.
Double Outlet Right Ventricle (DORV):
Frequency: Estimated to account for approximately 1–3% of CHD cases.
Overview: A condition where both the aorta and the pulmonary artery arise predominantly or entirely from the right ventricle, often resulting in mixed oxygenated and deoxygenated blood.
Top Hospitals for CHD Intervention in Babies
Boston Children’s Hospital (Boston, MA)
Boston Children’s is internationally renowned for its comprehensive Pediatric Heart Center, offering state-of-the-art surgical and interventional treatments for a wide range of congenital heart defects.
Children’s Hospital of Philadelphia (CHOP) (Philadelphia, PA)
CHOP is widely recognized for its leading-edge congenital heart programs, providing innovative treatments and advanced surgical care for complex CHD cases in infants.CHOP – Congenital Heart Center
Texas Children’s Hospital (Houston, TX)
As one of the largest pediatric hospitals in the world, Texas Children’s Hospital has a long-standing reputation for excellence in pediatric cardiac care, including complex congenital heart surgery and interventional procedures.
Cincinnati Children’s Hospital Medical Center (Cincinnati, OH)
Cincinnati Children’s is recognized for its innovative approaches and multidisciplinary teams that specialize in managing and treating complex congenital heart defects in infants.
Children’s Hospital Los Angeles (CHLA) (Los Angeles, CA)
CHLA provides comprehensive cardiac care for children, with a dedicated team focused on complex heart conditions and groundbreaking research in pediatric cardiology.CHLA – Cardiology & Heart Surgery
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