Every year, about 40,000 babies born in the United States—nearly 1 percent of all births—have a congenital heart defect, meaning that some part of their heart didn’t form correctly in the womb. About 1 in 4 of those infants have a critical congenital heart defect, serious enough to require surgery within their first year of life.
This diagnosis can cause incredible stress or worry, but it shouldn’t cause blame or guilt.
“There are a few heart defects that may be related to genetic abnormalities or family history, but most commonly, these happen by chance,” says UNC Health congenital heart surgeon Robert Hanfland, MD. “They’re usually not the result of anything the baby was exposed to or an event during pregnancy, so there’s not anything that could have been done to prevent it.”
While you may not be able to prevent a heart defect, there’s better treatment available than ever before.
“In just the past 10 to 20 years, our abilities to take care of congenital heart defects have improved in lots of ways,” Dr. Hanfland says. “For a majority of these concerns, care is much better than it used to be, and there are frequently great outcomes for patients.”
Dr. Hanfland explains what parents and other caregivers need to know about the diagnosis and treatment of congenital heart defects.
Types of Congenital Heart Defects
There are about 20 types of specific congenital heart defects, and it’s possible to have more than one. They can affect all parts of the heart—the septum, or the muscular wall that separates the chambers of the heart; the chambers, or rooms of the heart; the valves, which open and close to direct blood flow; and the veins or arteries, the vessels that deliver blood throughout the body.
“Some defects will cause abnormal blood flow to the heart or out of the heart, so that it works inefficiently,” Dr. Hanfland says. “There might be an obstruction narrowing the path to the heart. Some parts of the heart may not be as well-developed as they should be, so they can’t do the job they were meant to do. Sometimes, there may be an extra blood vessel, or vessels may be connected incorrectly.”
Your doctor will tell you the name of the congenital heart defect your baby has, but know that each defect can affect each child differently.
“Children can have the same heart defect or category of defect, but the severity of the defect and how much it will affect the child’s heart and their body is nowhere near the same,” Dr. Hanfland says. “Sometimes parents will read that certain defects can get better on their own, and some can, but their child’s heart and heart defect might vary pretty significantly from others in the category. Out of everything kids are treated for, these can be more unique for each child than anything else. It is really individualized.”
Diagnosis and Symptoms of Congenital Heart Defects
Parents frequently find out their child will have a congenital heart defect before birth, as defects are most frequently found via ultrasounds during pregnancy.
Other standard screenings that occur shortly after birth can detect defects, such as a pulse oximetry screening, which measures oxygen in the blood. Some babies may have bluish skin or lips, indicating poor oxygen flow. A pediatrician may be able to detect a murmur or other abnormal sound by listening with their stethoscope.
“If babies are having a hard time gaining weight and growing, that can be a sign,” Dr. Hanfland says. “The body can’t get all the energy it needs, so the baby won’t have energy to eat or to eat enough.”
If a defect isn’t severe, it may not cause any external symptoms, especially because other parts of the heart may compensate for the part not working as well. Some congenital heart defects aren’t diagnosed until the child is in school or even until they reach adulthood. At that point, a common symptom is lack of energy or fatigue during exercise or even regular activity as a result of the heart not working as efficiently as it could.
“As kiddos are growing, they may not know the difference, because it’s the only way they’ve ever lived,” Dr. Hanfland says. “But for both babies and children, they will have noticeably more energy and feel better after surgery.”
Treatment of Congenital Heart Defects
The treatment—and the timing of the treatment—will depend on the type and severity of the defect. While sometimes defects can resolve on their own, Dr. Hanfland says your cardiologist will be able to tell when a patient needs surgery.
“For some defects, we can wait and observe,” Dr. Hanfland says. “A child might be put on medication, and then we can wait to do the surgery when the child is bigger, which can be safer. Some children become sick quickly and are admitted to the intensive care unit before surgery or have surgery immediately after birth.”
During a waiting period, it’s important for children to see a pediatric cardiologist regularly.
“There can be changes to the heart not visible on the outside that can be found with regular monitoring,” Dr. Hanfland says. “Cardiologists can ensure that medications are optimized and screen for when surgery is appropriate. Surgery can be planned for when it’s a good time for the heart, the patient and the family.”
Your cardiologist can tell you if your child’s heart issue requires any activity limitations, but Dr. Hanfland says those aren’t common; in fact, he says that many children with congenital defects are generally active and their parents may be surprised when surgery is recommended.
“There may be no outward signs that the child is sick, and the child seems as active as they want to be, but if a defect isn’t repaired, it can become a problem that will affect the person when they’re older,” Dr. Hanfland says. “We want to prevent problems like pulmonary hypertension or high blood pressure in the lungs, due to the lungs overcompensating for an issue with the heart. For a lot of heart defects, we can wait to find the right window, but we have to be sure not to miss that opportunity.”
The type of repair needed will vary—some can be done with a minimally invasive approach, while others may require more extensive surgery. Some defects may require multiple surgeries over a person’s lifetime, while others may need just one. And what’s standard today may be different in the future, as there may be further developments in the next decades that continue to improve options and outcomes.
“We’re lucky to have had a lot of advances in these types of surgeries,” Dr. Hanfland says. “In the past, some of these surgeries were risky, but there were no other options. The field is now more advanced, and we have safer ways to perform these surgeries. With many defects, there will be normal length of life and quality of life after surgery, and the only difference between one child and another will be a scar on the chest.”
Questions about your child’s heart health? Talk to your doctor. If you need a doctor, find one near you.