Congenital Heart Defects Reference Guide for Parents

Jeniah Simpson wearing a red hat from the American Heart Association's Little Hats, Big Hearts for heat disease awareness.

Jeniah Simpson wearing a red hat from the American Heart Association’s Little Hats, Big Hearts. Supporters knit and crochet red hats to give to thousands of babies at participating hospitals during American Heart Month.

Congenital heart defects are the most common type of birth defect. But despite great advances in screening and diagnosis, congenital heart disease can go unnoticed for a long period of time until heart damage has progressed enough to cause detectable symptoms.

While we celebrate Valentine’s Day this week, it also marks Congenital Heart Disease Awareness Week. The pediatric cardiologists at Johns Hopkins Children’s Center and elsewhere remind both parents and their pediatricians to watch for any subtle signs that could signal the presence of congenital heart disease.

What Is a Congenital Heart Defect?

When the heart or blood vessels around it do not develop properly or develop abnormally before birth, a condition called congenital heart defect occurs (congenital means “existing at birth”). Congenital heart defects occur in close to one percent of all babies born, affecting some 40 thousand infants annually in the U.S. That’s about eight babies for every one thousand children born in the U.S. Most young people with congenital heart defects live into adulthood now, but may require more than one intervention or surgery to treat their condition.

Types of Congenital Heart Defects

  • A hole between two chambers of the heart (common defect)
  •  The right or left side of the heart is not formed completely (hypoplastic)
  • Only one ventricle is present
  • Both the pulmonary artery and the aorta arise from the same ventricle
  • The pulmonary artery and the aorta arise from the “wrong” ventricles

Signs and Diagnosis of Congenital Heart Disease

In infants, the classic signs include the following:

  • Fatigue
  • Sweating around the baby’s head during feeding
  • Slow growth
  • Breathing fast while at rest and/or asleep
  • Irritability
  • Bluish or pale skin, a sign of abnormally low oxygen levels

In older children, typical signs of congenital heart defects include:

  • Complaints of heart palpitations
  • Feelings of dizziness
  • Getting tired very easily with physical exertion
  • Inability to keep up with other kids

Cause of Congenital Heart Defects

In most cases, the cause is unknown. Sometimes a viral infection in the mother causes the condition. The condition can be genetic (hereditary). Most heart defects either cause an abnormal blood flow through the heart, or obstruct blood flow in the heart or vessels.

Treatment for Congenital Heart Problems

As children grow, some minor heart defects such as small holes may repair themselves. But when a defect requires correction, there are both non-surgical and surgical treatments available today which are less invasive and involve cardiac catheterization, medical device insertion, and minimally invasive heart surgery. In rare cases, a heart transplant may be needed.

Learn more about congenital heart defects from Johns Hopkins Medicine’s Pediatric Cardiology.


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