By David Chan, MD, Congenital Heart Program Medical Director, Children’s Hospital of Illinois and Marc Knepp, MD, Adult Congenital Heart Program Medical Director, Children’s Hospital of Illinois
Congenital heart disease (CHD) occurs when a child is born with a structural defect in his or her heart. About one percent of all live births in the U.S. have some sort of abnormality; however, most cases require little to no intervention. The seriousness of the disease can range from a minimal irregularity to a life-threatening flaw. Thanks to advances in modern medicine and technology, CHD is becoming a more manageable disease. Doctors are able to recognize malfunctions quicker and are better able to maintain a watchful eye over the years to come.
Over the past few decades, congenital heart disease has shifted from being solely a pediatric specialty to becoming an adult specialty as well. This transformation of patient age is due to a variety of medical improvements allowing patients to live longer and healthier lives. In fact, the number of adults in the U.S. with CHD outnumbers the number of children with CHD by more than two million. Within four decades, the rate of CHD patients living to adulthood skyrocketed from 40 percent to 95 percent.
One reason for this success came with the realization that operations for congenital heart disease are not a one-time fix. Regardless of the severity, patients with CHD need to regularly visit with their congenital cardiologist. This allows the physician to monitor the sustainability of the heart. Some heart defects require stitches or patches to close or cover holes. These repairs often are associated with scar formation. Patients who have regular visits for follow-up care are more likely to have issues detected early, when they are more treatable.
Patients with CHD used to be told not to have children, but that is no longer the case. If a woman with CHD wants to become pregnant, she should meet with her congenital cardiologist. While there is an increased risk of stress on her heart and a genetic passing of CHD to her child, a team of physicians can help minimize risk. It is important to plan a pregnancy if either the mother or father has CHD. The mom can go through a myriad of tests, such as a stress test, to make sure her heart is healthy enough for pregnancy. She can also meet with fetal medicine experts for prenatal counseling. A genetics team can help determine the probability of the baby inheriting a congenital heart disease. These extra precautions are in place to prepare the parents for, not deter them from, pregnancy and parenthood.
Once everything is clear, doctors can monitor the baby’s development. A fetal echocardiogram can be performed to look at the baby’s heart and recognize a heart defect in utero. Knowing the severity of a baby’s CHD helps the care team prepare for the birth. Depending on the severity of the defect, a baby might need immediate medical attention after birth. If the diagnosis is made in utero, then the baby can be delivered in a special environment with all working teams available to provide the best medical care possible.
No matter the severity, all heart defects should be regularly monitored by a congenital cardiologist. Whether a surgery to correct a defect was performed 20 years ago or 50, it is important to continue to have a good, working relationship with a specialized physician.
In some rare cases, heart defects are not realized until later in life. These symptoms can include a murmur (an extra sound from the heart), low oxygen levels, shortness of breath, dizziness, and other indicators of a struggling heart.
If you or your child has a diagnosed case of congenital heart disease, make sure you have regularly scheduled visits with your congenital cardiologist. If you are concerned with your heart health, please contact you primary care provider for a referral.
Children’s Hospital of Illinois currently has the largest Adult Congenital Heart Program in Illinois by clinic volume. To learn more about congenital heart disease or the Congenital Heart Center, call 800-443-9898.