Congenital heart defects

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Photo credit: Nellie Smith Photography
Every 15 minutes, a baby is born with congenital heart disease, the most common birth defect and leading cause of birth defect related infant death. Even for those who receive successful intervention, it is not a cure. Children and adults with CHD require ongoing, costly, specialized cardiac care and face a lifelong risk of permanent disability and premature death. More research and federal investment is needed to better understand CHD at every age, improve outcomes, and reduce costs.

Resources:
Children's Heart Foundation
March of Dimes
American Heart Association
Centers for Disease Control & Prevention
STAR-G Project

What are CHDs?

CHDs are problems with the heart's structure or blood flow through the heart that are present before birth. There are many different types of CHDs, ranging from those that pose a relatively small threat to a child's health to those that require immediate surgery.

CHD facts

  • CHDs are the #1 birth defect
  • Nearly one of every 100 babies is born with a CHD
  • CHDs are the leading cause of all infant deaths in the U.S.
  • Each year, approximately 40,000 babies are born in the U.S. with a CHD
  • Thousands of them will not reach their first birthday
  • Heart defects develop in the early weeks of pregnancy when the heart is forming, often before you know you’re pregnant
  • Babies with CHDs may grow into adulthood, but their hearts are never "fixed"

CHD indicators

Symptoms range from moderate to severe. They can cause minor problems in some newborns and more serious health problems in others. Some babies may appear healthy for the first weeks of life and only later begin to show symptoms that require emergency care. This is because infant hearts work differently before birth compared to after birth when they become fully dependent on the lungs. Things to look for:
  • Problems breathing
  • Pounding heart
  • Weak pulse
  • Very pale or blue skin color
  • Poor feeding
  • Very sleepy

Early detection

Early detection is important. Be prepared to ask questions during your 20-week anatomy scan to be sure your baby's heart is developing properly:
  1. Do you see four chambers?
  2. Is the heart rate normal?
  3. Will the ultrasound tech look at the arteries as part of the scan?
  4. Are the heart and stomach in the correct position?
  5. Is the heart function normal?
All newborns should be screened for CHDs with a pulse oximetry test that measures how much oxygen is in his or her blood using a noninvasive sensor attached to the finger or foot. Nebraska made this screening mandatory in 2013.