Congenital heart disease (CHD) is the most common birth defect, affecting 1 in 100 babies born in the United States.

“Of those infants affected, approximately 1 in 4 have critical congenital heart disease that requires cardiac surgery within the first year of life,” said Jennifer Whitham, MD, WakeMed Children’s – Pediatric Cardiology. “About 25 percent of infants with CHD have physical, developmental or cognitive disorders.”

It’s important for families to understand that congenital heart defects are 60 times more prevalent than childhood cancer and can be fatal, but there are approximately 1 million children and 1.4 million adults living with congenital heart disease today.

Congenital heart defects occur when parts of the heart do not form or form improperly during fetal development. The heart of a fetus is fully formed and beating by 3 weeks of pregnancy,
long before a woman even knows she is pregnant!

“Congenital heart defects range from a small hole in between the inner walls of the heart to those where essentially half the heart did not form,” said Dr. Whitham. “Most of the time a cause is not identified but more and more research is finding certain genetic mutations that are prevalent in those individuals with congenital heart disease.

“I am often asked to describe what I do as a pediatric cardiologist. In the simplest of terms, I am a really fancy plumber and electrician! I study the heart with multiple tools and figure out how the surgeon can ‘re-connect the plumbing’ so that the blue blood (deoxygenated) gets to the lungs and the red blood (oxygenated) gets to the body, all while sometimes using medicines to keep the heart beating as strong and efficiently as it can until those repairs can be made,” said Dr. Whitham.

Known Causes of Congenital Heart Defects

• Maternal diabetes, obesity, rubella, phenylketonuria (PKU)
• Genetic syndromes (Down Syndrome, Turner Syndrome, Noonan Syndrome and others)
• Maternal tobacco, alcohol and illicit drug use
• Certain medicines taken during pregnancy (ie. lithium, Retin-A®, Zoloft®) Congenital heart disease can be a lifelong medical condition. Many heart defects will require multiple surgeries, interventions and treatment with medications. However, there are some defects that correct on their own with time and growth and do not pose any increased risk as children age.

What Can Parents Do?

• If you are pregnant and have a history of a congenital heart defect or have a close relative who had/has one (mother, father, brother, sister, son, daughter) tell your obstetrician.
• In infants, if you notice poor feeding, blueness of the mouth (particularly the gums and tongue), constant fast breathing, or difficulty gaining weight, call your pediatrician. Some signs of poor feeding include fatigue, panting during feeds and sweating with feeds.
• Talk to your pediatrician if you have concerns about your child’s heart. They will perform a thorough examination, listen to your concerns and help guide you if further evaluation by a pediatric cardiologist is warranted.

MEET THE EXPERT

Jennifer Whitham, MD, pediatric cardiologist with WakeMed Children’s began her medical career in 2006 and has worked in numerous hospital settings in pediatric and pediatric cardiology departments. In addition, she served as an assistant professor of pediatrics in the division of pediatric cardiology at The University of North Carolina at Chapel Hill. Her clinical interests include congenital heart disease, fetal cardiology and sports cardiology. Dr. Whitham knew early in her medical career that she wanted to work with children, and has enjoyed helping children with heart disease survive and thrive.

This article is adapted from our Families First Magazine. Interested in getting future issues of Families First delivered to your home? Subscribe here.