Pediatric cardiologist Jonathan Johnson, M.D., answers the most frequently asked questions about congenital heart defects in children.

Some very minor forms of congenital heart disease, like very small holes in the heart or very mild stenosis of different heart valves may just need to be followed every couple of years with some sort of an imaging study like an echocardiogram. Other more significant forms of congenital heart disease may require surgery that could be done via an open heart surgery, or it could be done in the cardiac catheterization lab using different devices or different techniques. In certain very severe situations, if surgery can't be performed, transplant may be indicated.

The specific symptoms that a child may have if they have congenital heart disease are really dependent on the age of the child. For infants, their biggest source of caloric expenditure is actually while eating. And thus most signs of congenital heart disease or heart failure actually come when they're eating. This can include shortness of breath, difficulty breathing, or even sweating while they're feeding. Younger children will often present with symptoms related to their abdominal system. They may have nausea, vomiting with eating, and they may get those symptoms with activity as well. Older teenagers meanwhile, tend to present more symptoms such as chest pain, fainting or palpitations. They also may present with symptoms during exercise or activity. And that's actually a really big red flag for me as a cardiologist. If I hear about a child, especially a teenager who's had chest pain, or has fainted with activity or with exercise, I really need to see that child and I need to make sure that they get an appropriate workup.

Often when your child has just been diagnosed with congenital heart disease, it's hard to remember everything that was said to you at that first visit. You can be in shock having just heard this news. And oftentimes you may not remember everything. So it's important in the follow-up visits to ask these types of questions. What do my next five years look like? Are there any procedures that are going to be needed in those five years? Any surgeries? What type of testing, what type of follow-up, what type of clinic visits are going to be needed? What does this mean for my child's activities, athletics, and the different things that they want to do on a daily basis. And most importantly, how do we work together to make this child be able to have as normal of a life possible despite that diagnosis of congenital heart disease.

You should ask your doctor what type of procedures may be needed for this form of congenital heart disease in the future. They may be performed using open-heart surgery, or they could be done using cardiac catheterization. For open-heart surgery, it's important to ask your doctor about the timing of that surgery. For the different, specific types of congenital heart disease, there is actually certain times where it's better to do the surgery than others to have the best possible outcome, both short- and long-term for that child. So ask your doctor if there's a particular time that works better for that particular disease and for your child.

This is actually the most common question I get from parents and from children after we make a diagnosis of congenital heart disease. Athletics is so important to many of these child's lives, to their friendship groups and how they interact with their communities. In most forms of congenital heart disease, we do our best to try to figure out a way that they can still participate. There are some forms of congenital heart disease, however, where certain sports may not be advised. For instance, for some of our patients, they may have a certain type of a genetic syndrome that makes the walls of their arteries very weak. And those patients, we don't want them weightlifting or doing any sort of heavy pushing that could cause those arteries to dilate and potentially rupture. In most cases though, we are able to figure out a way to have children play the sports that they love on a daily basis.

For our patients who have congenital heart disease, as they get older, we often counsel them that certain forms of congenital heart disease are heritable. This means that if a parent has congenital heart disease, there's a certain small risk that their child may also have congenital heart disease. This may be the same type of congenital heart disease that their parent has, or it may be different. Thus, if those patients become pregnant, we do need to monitor them closely during pregnancy, including doing extra scans of the fetus using echocardiography during the pregnancy. Fortunately, the vast majority of our congenital heart disease patients are able to have children of their own in the current era.

The relationship between a patient, their family and the cardiologist is critically important. We often follow these patients for decades as they get older. We watch them go from babies to adults. If something comes up that you're not clear about, but that doesn't make sense to you, ask questions. Please don't be afraid to reach out. You should always feel able to contact your cardiology team and ask them any questions that may arise.

March 13, 2024