Congenital Heart Disease

father with congenital heart disease hugging daughter and smiling at camera outside on sunny day

Adults with congenital heart disease need specialized care

Not all heart problems develop as you age. Some, known as congenital heart disease or congenital heart defects, are present at birth. These birth defects affect the heart walls, valves or major blood vessels and can disrupt how blood flows through the heart to the rest of the body. As a result, some people with congenital heart disease can develop other heart conditions, such as congestive heart failure or arrhythmia.

If you have congenital heart disease, treatment depends on what type of defect you have and how it affects your health and quality of life. Regular visits with a cardiologist can help identify any changes in your condition and ensure you receive the care you need to thrive.

Types of congenital heart disease

There are many types of congenital heart disease. Some of the more common forms include:

Heart valve defects

Heart valve defects, also known as valvular heart disease, are flaws in the valves of the heart.

Your heart has four valves with flaps that open and close to help blood flow in a one-way course through the organ. The aortic valve, for example, has three flaps that allow blood to pass from the heart’s left ventricle into the aorta, a major artery that takes blood to the rest of the body. If you were born with a form of congenital heart disease called a bicuspid aortic valve, you have two flaps instead of three.

A bicuspid aortic valve can lead to aortic stenosis, which is when the valve is narrow or stiff. This forces the heart to work harder to pump enough blood. Aortic stenosis can cause shortness of breath during physical activity, lightheadedness and chest pain. A two-flap valve can also allow blood to leak backward into the ventricle, called regurgitation.

Holes in the heart

A wall called the septum separates the chambers on the left and right sides of your heart. Holes in the septum typically close as a baby grows. But septal defects, or holes in the heart, are those that remain in the wall.

An atrial septal defect, also known as a patent foramen ovale, is a hole between the atria, the heart’s upper chambers. A ventricular septal defect is an opening between the ventricles, or lower chambers.

An atrial septal defect can make you feel like your heart is racing occasionally. An atrial septal defect and a ventricular septal defect can cause shortness of breath.

Blood vessel defects

Some forms of congenital heart disease affect the blood vessels in and around the heart. Patent ductus arteriosus, for example, occurs when a blood vessel called the ductus arteriosus, which normally closes shortly after birth, stays open. This can lead to extra blood entering the pulmonary arteries (arteries in the lungs), straining the heart and lungs. Patent ductus arteriosus can cause shortness of breath.

Another type of defect, transposition of the great arteries, occurs when the roles of two main arteries, the aorta and pulmonary arteries, are reversed. As a result, blood does not flow through the heart as it should, and the body doesn’t get enough oxygen-rich blood. Most people with this form of congenital heart disease have surgery as babies.

Other common congenital heart defects

Coarctation of the aorta
Ebstein anomaly
Hypoplastic left heart syndrome
Pulmonary stenosis
Tetralogy of Fallot
Tricuspid atresia

What causes congenital heart disease?

The most common type of birth defect, congenital heart disease, occurs when a baby’s heart doesn’t develop properly during pregnancy. Doctors don’t always know why some babies’ hearts form defects, although genetic changes, some of which can pass from parent to child, may contribute.

Diagnosing a congenital heart disease

Some people with congenital heart disease are diagnosed as babies or children. Many people, however, don’t learn they have a heart defect until they’re adults.

If your physician suspects a heart defect, they’ll start by asking you about your health history. They’ll also perform a physical exam to check for symptoms of congenital heart disease, such as abnormal heart rhythms or murmurs.

If your physician suspects genetics could play a role in your diagnosis, they may recommend genetic testing to find out whether a gene mutation could be the cause.

To gather more information, your physician may order tests, such as:

Electrocardiogram

An electrocardiogram (ECG or EKG) tracks the electrical signals in the heart to monitor its health and functionality.

Pulse oximetry

Pulse oximetry measures levels of oxygen in the blood, which can be used to detect lower oxygen levels caused by certain congenital heart defects.

Imaging tests

Imaging tests, such as echocardiograms, cardiac CT scans, and MRIs, provide detailed pictures of the heart to identify problematic areas and abnormalities.

Treatment for congenital heart disease

No two cases of congenital heart disease are alike. Your heart and vascular team will create a treatment plan just for you.

If you have a mild form of congenital heart disease, you may not need treatment. Instead, your cardiologist may recommend regular checkups to ensure your heart functions well and symptoms aren’t affecting your quality of life.

No matter what your treatment plan entails, it’s important to follow it closely. Take your medications as prescribed and don’t stop or start medicine without talking to your physician. Keep all checkup appointments so your healthcare provider can track how your treatment plan is working. Make healthy lifestyle changes to help protect your heart and complement your treatment. Finally, if you notice any new or worsening symptoms, tell your physician right away so you can work together to address them.

Frequently asked questions

How do I know if I have a congenital heart disease?

If you have not already been diagnosed, then there is a lesser likelihood that you will have one. However, if you develop new symptoms of heart failure or arrhythmias, image tests by a cardiologist can help you find out what is causing these symptoms.
Can I pass congenital heart disease along to my children?

It is rare to pass congenital heart disease to your children. Talking to a cardiologist can help determine if your relatives require further cardiovascular or genetic testing.