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Adult Congenital Heart Disease

Adult Congenital Heart Disease

Children who were treated for a congenital heart defect when they were little may think they do not need any further follow-up with a cardiologist. But that’s not always true. Many have been told they were “fixed,” but in reality they have only been repaired. Those who were successfully treated as children may experience complications at different times throughout their life. These issues will vary in severity, depending on the defect.

Routine follow-up with a specially trained adult congenital heart cardiologist is vital to reduce the potential problems patients may encounter as they get older.

Because there are roughly 50 different categories of congenital heart defects, the problems that may occur vary greatly from one condition to another. Each patient should ask his or her physician / cardiologist what symptoms to look out for.

What to Expect During a Visit

A typical congenital heart patient visit includes an Echo ECG, a health history, and a physical exam. Typically, the patient can expect to see three or four different congenital heart professionals during the course of the visit.

At each visit, the patient and cardiologist discuss when to schedule the next visit and what future testing to include in the treatment plan.

Adult Congenital Heart Disease Treatment

Patients with congenital heart disease can have many different symptoms.  Treatment is based on the symptoms. Some examples:

For a patient whose heart beats fast, either all the time or every once in a while, treatment options may include:

  • Medicines to control the heart rate or to prevent the abnormal rhythm
  • An ablation procedure, where the electrical circuit causing the rapid heartbeat is interrupted
  • Pacemaker
  • Defibrillator

For a patient whose valve problem becomes severe, treatment options include:

  • Valve repair
  • Valve replacement

For a patient who has had a heart infection called infective endocarditis, treatment may include:

  • Antibiotics
  • Heart surgery, if needed

For a patient with a very weak heart muscle, treatment options may include:

  • Medications
  • Treatment of the condition causing the weak heart muscle (for example, a very leaky or narrow valve)
  • A pacemaker procedure called “cardiac resynchronization”
  • Mechanical circulatory support and/or heart transplantation

Who Should Receive Genetic Screening?

Some patients may have congenital heart disease, which is related to a genetic condition.

  • Abnormality of an infant's chromosomes (5 percent to 6 percent)
  • Single gene defects (3 percent to 5 percent)

Knowing if a patient has a genetic condition is important in order to improve their healthcare treatment. It also helps patients understand the possible risks to other people in their family.

Patients with the following issues may benefit from a genetic screening:

  • Problems with growth such as short stature
  • Another type of birth defect in addition to a congenital heart defect
  • Hearing loss or major problems with vision
  • Learning disabilities or developmental delay
  • Conditions that don’t have a known cause in a patient such as a major kidney problem, a thyroid disorder, or a mental health diagnosis
  • A family history of any of these concerns or a family history of congenital heart disease

Patients with a heart defect who are interested in discussing pregnancy may benefit from genetic counseling and / or screening.

Last Updated 06/2020

Reviewed By Amy Rich, MSN, APRN, CNP

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