Growing Up With a Congenital Heart Defect

If your child has a congenital heart defect, you’ll naturally have a lot of questions and concerns. But try to remember that many children grow up with these conditions and live long, normal lives.

You may have to make some adjustments throughout their life because of their heart problem, like seeing a cardiologist, or heart doctor, regularly. But doctors can often repair issues early on.

Lifelong Care

Growing up with a congenital heart defect does raise your child’s chance of other heart problems later. So it’s important to keep up regular visits with a pediatric, or children’s, cardiologist as part of their care.

Your child might also need to take daily heart medications. There are a variety of medicines, and you and your doctor should discuss what’s best.

A type of medication called an “ACE” inhibitor, for example, widens blood vessels to ease blood pressure and improve circulation, and also helps the heart work more easily.

Other medicines, called beta blockers, also take some of the strain off the heart.

Some congenital heart defects don’t need treatment until adulthood. Bicuspid aortic valve disease, for example, is when a baby is born with two “leaflets” in the valve instead of three. Symptoms are rare, but a surgeon might need to repair or replace the valve down the road when the person is in their 40s, 50s, or even 60s.

Your child is more likely to get infections of their heart, called infective endocarditis. They may also have heart rhythm problems, called arrhythmias, and to have possible heart failure.

Sports and Physical Activity

Being active is good for everyone. Plus, it’s fun! So if you have hopes of your child playing sports, it’s probably still possible -- with some limits.

Talk to your child’s doctor about what activities are safe and what precautions you should take. The cardiologist may advise against contact sports, for example. Just know the signs that your child is overdoing it, such as shortness of breath, major fatigue, or needing a long time to recover from play.


Stay Aware

Serious heart defects can cause your child to grow slower. As a baby, they might even get tired during feedings and eat less than a healthy child.

As a result, they could be smaller than their friends. This is normal, but they should “catch up” by the time they reach adulthood.

When to Call a Doctor or 911

You’ll need to know the symptoms that mean that your child’s heart health may be changing.

If they become short of breath or can’t exercise, tell their doctor right away.

If they have any chest pains or sudden cardiac arrest (their heart rhythm becomes erratic and they lose consciousness or become unresponsive), call 911. And tell the emergency personnel they have a congenital heart defect.

Ask your doctor what else you should watch for. Once you have that knowledge, you can have more peace of mind that your child will be OK.

WebMD Medical Reference Reviewed by James Beckerman, MD, FACC on November 07, 2020



Cleveland Clinic: “Adult Congenital Heart Disease.”

Mayo Clinic: “Congenital Heart Defects in Children: Treatment and Drugs.”

Ohio State University Wexner Medical Center: “Congenital Heart Defects.”

CDC: “Living with a Congenital Heart Defect.”


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