Genetic Counselors Serve as Valuable Resource on a Heart Warrior’s Journey

Summertime is the busy season for parents obtaining sports and camp participation clearance forms from their kids’ pediatricians in Georgia. This form highlights specific details of family history, like unexplained early sudden death in a relative, that can indicate inherited heart disease in children. Some of these conditions can result in sudden cardiac arrest (SCA), making it vital to identify them early and develop appropriate treatment plans.

At Children’s Healthcare of Atlanta Cardiology, the cardiovascular genetic counseling service led by Linda Knight and Erin Demo is a national leader in evaluating people for inherited heart disease based on their family history. Their work has led to recognition of our Hypertrophic Cardiomyopathy Program as a program of excellence by the Hypertrophic Cardiomyopathy Association, a unique recognition for a pediatric program. With SCA taking center stage in the news and on social media over the past couple of years, Children’s Cardiology has the resources to fully evaluate patients and family members to assess risk for inherited heart disease and how they should be managed.

The cardiovascular genetic counseling service at Children’s Cardiology supports inpatient, outpatient genetic counseling for patients with arrhythmia, cardiomyopathy, and aortic aneurysm conditions. Knight and Demo specialize in patient and family education and genetic test interpretation.

The Children’s cardiovascular genetic counselors:

  • Arrange genetic testing for children with certain types of genetic heart disease (rhythm, cardiomyopathy, dilated aorta).
  • Review patient or relative genetic testing results to determine if these increase the risk for a heart condition.
  • Select the best genetic test for a specific health history or condition.
  • Arrange genetic testing for a familial genetic heart diagnosis.
  • Educate patients and parents about genetic conditions.
  • Discuss family screening recommendations.
  • Provide resources to families to help them understand their diagnosis.
  • Assist patients and families as they adapt to a genetic diagnosis.

The genetic counselors were initially hired to see patients with genetic rhythm conditions. Knight said testing for a genetic component has changed over the past couple of decades, and they now see patients for many types of familial heart conditions. Genetic testing is more widely available, relatively inexpensive and covered by insurance. Samples are easy to obtain by mail using a cheek swab and a telemedicine follow-up visit, making genetic testing accessible to our patients throughout the state. As test methods evolve and new genes are discovered, testing becomes more conclusive and helpful in developing treatment plans.

Changes in genetic testing

“Genetic counselors act as educators, and we can spend substantial time with the family discussing the specifics of the result and whether or not it’s informative,” Knight said. “We counsel families about how to talk with others about the result, whether more testing will help and how certain outcomes will influence cardiac care plans. We can also help families sort through feelings and reframe the information they’re receiving to be more useful. Often families feel empowered when they know what they’re dealing with and how to best protect and help their child.”

For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.


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English/Spanish overview of the genetic counseling service at Children’s Cardiology.

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