What is CHD?

There are many different types of pediatric heart disease.

Some are very serious and require frequent follow up, monitoring and hospitalizations. Most, however, require regular follow up and occasional hospitalizations but allow the child and family to lead a very normal daily life.

Learning about CHD

You may have recently learned that your child has a congenital heart defect (CHD) or acquired heart disease. Maybe you just learned about the Pediatric Heart Network, or maybe you came to us to learn more about your child’s condition. When your child is diagnosed with ANY heart condition, it can feel threatening and overwhelming. Learning more can help, but it is important to remember that each child is different. This section shares broad facts about CHD and details on research being done by Pediatric Heart Network and others, advancing what we know about these conditions.


Research in CHD

Congenital heart defects are structural problems with the baby’s heart that are present at birth. Pediatric acquired heart disease is heart disease that children are not born with but show up during childhood.

Most people don’t realize that congenital heart defects are not rare. In fact, heart defects are the #1 birth defect worldwide. In the United States alone, that means about 40,000 babies will be born each year with CHD. Also, more and more children now have acquired heart disease. Despite these overwhelming statistics, many children and families touched by heart conditions do well and live typical lives. Progress in the diagnosis and care of children with heart conditions has advanced in large part due to research.

It is important to learn about CHD so you can be sure your child gets proper care. Even though the number of children with CHD is at least three times the number of children with childhood cancers, very little research has been done on pediatric heart disease. In the past 25 years, fewer than 40 randomized clinical trials have been carried out in patients with congenital or acquired heart disease and nearly half of these dealt only with a patent ductus arteriosus in preterm infants.

There are several reasons that there are so few research studies. Because the different types of CHD in children are not really common, most hospitals and doctors don’t see enough children with any one type to do most studies and get results that are useful. There is a lack of resources and funding to study CHD nationally, and many parents don’t live near a research site. Also, parents are often unaware of studies and/or feel uncomfortable about putting their child into a research study because they don’t understand them.

The PHN studies heart disease in children by offering flexible ways for enough families to participate through a network of hospitals where we can enroll, monitor and follow children in consistent ways.

Navigating a Diagnosis

If your child have been diagnosed with a heart condition, you may feel overwhelmed with new responsibilities and not know where to start. The more you learn, the more in control you will feel.

As you begin to get used to the day-to-day management, you will learn to cope with the new challenges of managing your child’s illness.

After a while, your daily activities will become routine and your family life will get back to normal.

Helpful Resources

Many resources, some of which are listed in our Helpful Resources section, are available to you.  To learn more, consider:

  • Local or hospital libraries for books or lists of professional organizations
  • Support groups
  • Reliable internet websites
  • Healthcare professionals