Congenital Heart Disease Facts

• Congenital heart disease (CHD) is the MOST common birth defect affecting one in 100 babies born in the United States.
• There are approximately one million children and 1.4 million adults with congenital heart disease living today.
• In the US, diseases of the heart are the #1 cause of mortality in children, outpacing childhood cancer.
• Of those affected, approximately one in four infants have critical congenital heart disease (heart defects requiring cardiac surgery within the first year of life).
• About 25% of infants with CHD have physical, developmental, or cognitive disorders. And 50% of children with CHD receive some form of special education.
• About 95% of patients with non-critical CHD survive to age 18 years while just under 70% of patients with critical CHD survive to age 18 years.

How Congenital Heart Defects Develop

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 three 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. And, unfortunately, we still do not understand why they occur.

Known Causes of Congenital Heart Disease

• Maternal diabetes, obesity, rubella, phenylketonuria (PKU)
• Genetic syndromes (Down Syndrome, Turner Syndrome, Noonan Syndrome, and others)
• Maternal tobacco, EtOH, and illicit drug use
• Certain medicines taken during pregnancy (ie. Lithium, Retin-A, Zoloft)

Congenital heart disease is oftentimes a lifelong medical condition. There are some defects that correct on their own with time and growth. But there are also many heart defects that will require multiple surgeries/interventions and/or treatment with medicine administered for life.

The Role of the Pediatric Cardiologist

I am often asked to describe what is a pediatric cardiologist. In the simplest terms, we are plumbers and electricians! We study the heart with multiple tools (stethoscope, ultrasound, MRI, CT, angiography) 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.

What You Can Do

• If you are pregnant and have a history of a congenital heart defect or have a first degree relative who had/has one (mother, father, brother, sister, son, daughter), tell your Obstetrician because you should undergo additional ultrasound screenings of your baby’s heart. This is called a fetal echocardiogram.
• In infants, if you notice poor feeding, such as fatigue, panting during feeds, sweating with feeds, blueness of the mouth (particularly the gums and tongue), constant fast breathing or difficulty gaining weight, communicate these concerns with your child’s pediatrician.
• If you have concerns about your child’s heart, talk to your pediatrician. He or she will perform a thorough examination, listen to your concerns and help guide you to whether further evaluation by a pediatric cardiologist is warranted.

Learn More About WakeMed Pediatric Cardiology

Heart issues in an infant or child can be scary. Our pediatric cardiology team is here for you to offer support, guidance and top quality medical care. Learn more about pediatric cardiology.