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It's amazing to think that a baby's heart starts developing within a few weeks into pregnancy. For expectant moms and dads, hearing the "thump, thump" of the baby's heartbeat is a sure sign of the life that is growing inside.

The heart is a complex organ. It's actually a muscle about the size of your child's fist. The heart is made up of four chambers and four valves, and it works like a pump pushing nutrient- and oxygen-rich blood out to the body. If something goes wrong — even ever so slightly — when the heart is forming, it can lead to congenital heart disease: a defect in the heart that is present at birth.

There are more than 35 known types of congenital heart disease, ranging from simple to complex problems. Simple defects may involve one heart valve or a hole inside the heart. Complex issues may affect several parts of the heart and how blood is circulated. Even so-called simple conditions can sometimes be complicated.

If you or your child has congenital heart disease, it means one or more parts of the heart didn't form normally. Congenital heart disease can affect the heart's:

  • Structure (its shape)
  • Function (how it works) 
  • Both

Most heart defects disrupt how blood flows through the heart and to the rest of the body, which can cause other changes in the developing heart. Heart defects can affect different parts of the heart, including:

  • Septum: the inside walls of the heart
  • Valves: the doors that help blood flow through the heart
  • Veins and arteries
  • Electrical system, or how the heartbeat is controlled and coordinated

Heart defects range from being mild to severe.

SimpleMild pulmonary stenosis, repaired ventricular or aortic septal defect
ModerateCoarctation of the aorta, Ebstein anomaly, milder forms of tetralogy of Fallot
Severe or highly complexSingle ventricle disorders such as hypoplastic left heart syndrome or tricuspid atresia, transposition of the great arteries with a Mustard type of repair, any type of congenital heart disease that causes cyanosis (not enough oxygen getting to the body's tissues), complex tetralogy of Fallot

You may worry and have concerns, but take heart. Most people born with congenital heart disease today are able to live full lives thanks to advances in medical care.

It is important that you or your child learns about their condition and receives lifelong specialized heart care and monitoring. Studies have linked congenital heart disease to other health problems including infections of the heart, autism, learning disabilities, and developmental and psychosocial issues.

Children with congenital heart disease are more likely to miss school and visit the hospital (3 to 4 times higher rates of visits to the emergency room). There is also financial stress on the family and, when the child reaches adulthood, uncertainty about having a family of their own. There are many resources available to help you on your journey.

  • Last Edited 03/11/2024