Adult Congenital Heart Disease

Providing lifelong comprehensive care for patients with congenital heart disease

Congenital heart disease is the most common type of birth defect in the United States. There have been many recent advances in treatments and care.

Children born with congenital heart disease, who might have died in infancy or childhood in the past, may now reach adulthood.

With appropriate care and counseling, adults born with heart defects can live fulfilling, healthy lives.

How is congenital heart disease treated?

We may identify a child with severe congenital heart defects shortly after birth or during the first few months of life. Babies may have a bluish discoloration or low blood pressure shortly after birth or within several months. They may have breathing difficulties, feeding difficulties or poor weight gain.

To check for heart defects in the newborn, common tests include:

  • Chest x-ray: provides information about the heart size and shape;
  • Electrocardiogram (EKG): provides information about electrical activity as it travels through the heart muscle
  • Echocardiogram (ultrasound): provides images of the inside of the heart.

Still, congenital heart disease is diagnosed in adulthood. To diagnose this in adulthood, your doctor will perform a complete history and ask about certain symptoms. This will include shortness of breath, dizziness and chest pain.

Your doctor will perform a physical exam and listen to your heart with a stethoscope. The doctor may suspect a problem if there is a murmur present on the exam. A murmur is sound that is detected by the stethoscope when blood travels through the heart or great vessels. Some murmurs occur as a result of defects in the heart. To diagnose a congenital heart defect, an echocardiogram may be performed. This test provides images of the inside of the heart.

How is congenital heart disease diagnosed?

Most defects will need surgical treatment to repair the underlying defect. As a result of advances in therapies, there are also transcatheter (non-surgical) options for repair. Simple defects may not need immediate surgery. Rather, some patients may need to follow with their doctor.

Importantly, patients with congenital heart disease need lifelong treatment. During adulthood, patients may be at risk for development heart conditions, including:

  • heart failure
  • heart rhythm problems
  • high blood pressure in the lungs (pulmonary hypertension)

These may need specific treatment. Also, patients may develop problems due to their initial surgical repair. They may need surgeries or non-surgical interventions as adults to address these problems.

Why see an adult congenital heart specialist?

Without proper care, adults born with congenital heart defects can face a range of health risks. Even the most ordinary procedure can have risks if it is not carefully coordinated with the appropriate team.

Many congenital heart defects are successfully repaired in childhood. However, people with heart conditions need to be monitored their whole life.

Our specialists provide lifelong care for your specific condition. We’ll help you understand your symptoms. We’ll support and guide you through many lifestyle decisions—from family planning to exercise. One of the best steps for your health is staying current with a qualified specialist. This ensures you know how your overall health and your heart condition relate and how changes can affect your health.

    Understanding Congenital Heart Disease

    How is congenital heart disease treated?

    We may identify a child with severe congenital heart defects shortly after birth or during the first few months of life. Babies may have a bluish discoloration or low blood pressure shortly after birth or within several months. They may have breathing difficulties, feeding difficulties or poor weight gain.

    To check for heart defects in the newborn, common tests include:

    • Chest x-ray: provides information about the heart size and shape;
    • Electrocardiogram (EKG): provides information about electrical activity as it travels through the heart muscle
    • Echocardiogram (ultrasound): provides images of the inside of the heart.

    Still, congenital heart disease is diagnosed in adulthood. To diagnose this in adulthood, your doctor will perform a complete history and ask about certain symptoms. This will include shortness of breath, dizziness and chest pain.

    Your doctor will perform a physical exam and listen to your heart with a stethoscope. The doctor may suspect a problem if there is a murmur present on the exam. A murmur is sound that is detected by the stethoscope when blood travels through the heart or great vessels. Some murmurs occur as a result of defects in the heart. To diagnose a congenital heart defect, an echocardiogram may be performed. This test provides images of the inside of the heart.

    How is congenital heart disease diagnosed?

    Most defects will need surgical treatment to repair the underlying defect. As a result of advances in therapies, there are also transcatheter (non-surgical) options for repair. Simple defects may not need immediate surgery. Rather, some patients may need to follow with their doctor.

    Importantly, patients with congenital heart disease need lifelong treatment. During adulthood, patients may be at risk for development heart conditions, including:

    • heart failure
    • heart rhythm problems
    • high blood pressure in the lungs (pulmonary hypertension)

    These may need specific treatment. Also, patients may develop problems due to their initial surgical repair. They may need surgeries or non-surgical interventions as adults to address these problems.

    Why see an adult congenital heart specialist?

    Without proper care, adults born with congenital heart defects can face a range of health risks. Even the most ordinary procedure can have risks if it is not carefully coordinated with the appropriate team.

    Many congenital heart defects are successfully repaired in childhood. However, people with heart conditions need to be monitored their whole life.

    Our specialists provide lifelong care for your specific condition. We’ll help you understand your symptoms. We’ll support and guide you through many lifestyle decisions—from family planning to exercise. One of the best steps for your health is staying current with a qualified specialist. This ensures you know how your overall health and your heart condition relate and how changes can affect your health.

      IU Health offers the only comprehensive ACHD program in the state of Indiana recognized by the Adult Congenital Heart Association. Our program is one of the largest in the Midwest.

      We care for patients who need lifelong monitoring of their heart conditions and partner with experts at the Riley Heart Center and researchers at the IU School of Medicine. Together, we bring the latest medicine and treatment options to support ACHD patients with the highest quality care and support. This includes:

      Transition from pediatric programs to the IU Health Adult Congenital Heart Program

      Whether you are transitioning from the Riley Heart Center or another pediatric program, we provide support for you. We have specialists and resources for you to make the transition to adult care simple and smooth. We can provide resources on reproductive health and education for teens who are becoming sexually active or helping young women navigate questions about getting pregnant.

      Advanced diagnostic and imaging technology

      Cardiac imaging plays a critical role in the accurate diagnosis of congenital heart disease. At IU Health, your screenings will be performed with state-of-the art technology. The results will be interpreted by individuals with expertise in congenital heart disease.

      Access to highly skilled adult congenital cardiologists, cardiac surgeons and interventionalists

      Our team features board certified cardiologists specially trained and experienced in treating adults with congenital heart defects. In addition, we have interventional ACHD cardiologists and congenital cardiothoracic surgeons. They work together in “hybrid” labs to provide non-surgical care when possible. Together, our approach delivers personalized care, no matter how complex the disease.

        We provide a patient-centered experience for you. That means you will have the resources you need to understand your heart defect. Our team of experts across many specialties meets on a weekly basis to discuss each case. This allows us to provide patients with the highest level of personalized, compassionate care.

        Why IU Health for Adult Congenital Heart Disease

        IU Health offers the only comprehensive ACHD program in the state of Indiana recognized by the Adult Congenital Heart Association. Our program is one of the largest in the Midwest.

        We care for patients who need lifelong monitoring of their heart conditions and partner with experts at the Riley Heart Center and researchers at the IU School of Medicine. Together, we bring the latest medicine and treatment options to support ACHD patients with the highest quality care and support. This includes:

        Transition from pediatric programs to the IU Health Adult Congenital Heart Program

        Whether you are transitioning from the Riley Heart Center or another pediatric program, we provide support for you. We have specialists and resources for you to make the transition to adult care simple and smooth. We can provide resources on reproductive health and education for teens who are becoming sexually active or helping young women navigate questions about getting pregnant.

        Advanced diagnostic and imaging technology

        Cardiac imaging plays a critical role in the accurate diagnosis of congenital heart disease. At IU Health, your screenings will be performed with state-of-the art technology. The results will be interpreted by individuals with expertise in congenital heart disease.

        Access to highly skilled adult congenital cardiologists, cardiac surgeons and interventionalists

        Our team features board certified cardiologists specially trained and experienced in treating adults with congenital heart defects. In addition, we have interventional ACHD cardiologists and congenital cardiothoracic surgeons. They work together in “hybrid” labs to provide non-surgical care when possible. Together, our approach delivers personalized care, no matter how complex the disease.

          We provide a patient-centered experience for you. That means you will have the resources you need to understand your heart defect. Our team of experts across many specialties meets on a weekly basis to discuss each case. This allows us to provide patients with the highest level of personalized, compassionate care.

          Patient Stories for Adult Congenital Heart Disease