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AAP Conference Preview: Patients with congenital heart disease at risk for neurodevelopmental issues :

October 7, 2016

Editor’s note: For more on educational sessions and events at the 2016 AAP National Conference & Exhibition in San Francisco, read the preview issue of AAP News Today. To register for the conference, visit

When Bradley Marino, M.D., FAAP, was a cardiology fellow working in the cardiac intensive care unit, the majority of his surgical patients were surviving. Yet something was preventing them from thriving.

That something, he discovered, were neurodevelopmental and psychosocial impairments.

“The big issue right now that we’re facing with all of our congenital patients as they age, which really was not appreciated until the last decade or so, is specific neurodevelopmental/psychosocial issues,” said Dr. Marino, a member of the AAP Section on Cardiology and Cardiac Surgery. “These issues may have a bigger impact on quality of life than cardiovascular residual issues.”

Dr. Marino will discuss the pediatrician’s role in identifying and managing neurodevelopmental and social-emotional problems in these patients during a session titled “Congenital Heart Defects: the Importance of Transition and Lifelong Cardiac Specialty Care (F1013)” from 7:30-8:15 a.m. Oct. 22 at the AAP National Conference & Exhibition in San Francisco.

He also will discuss the transition of pediatric patients to adult care, including the effectiveness of different models.

Children with congenital heart disease are born with immature brains, and they have a higher incidence of structural abnormalities in their brains than the general population, said Dr. Marino, co-director of research and academic affairs in the Heart Center at Lurie Children’s Hospital of Chicago and professor of pediatrics-cardiology, Northwestern University Feinberg School of Medicine. This vulnerable brain then is insulted during cardiac surgery. In addition, low blood pressure, low oxygen saturation and bleeding issues decrease oxygen delivery to the brain.

“In the end, these kids have a higher incidence of white matter injury,” he said.

Furthermore, there are more than 700 known genetic abnormalities and syndromes associated with congenital heart disease that may affect brain development.

About 75% of children with complex congenital heart disease are at risk for language impairment, attention-deficit/hyperactivity disorder, executive dysfunction, visual processing issues, fine and gross motor problems, and behavioral and emotional difficulties, Dr. Marino said. More than 30% require services such as tutoring, special education, and physical, occupational and speech therapies.

In 2012, the American Heart Association released the first scientific statement on how to evaluate and manage neurodevelopmental and psychosocial issues in children with congenital heart disease. Dr. Marino was lead author of the statement, which was endorsed by the Academy.

Pediatricians need to ask families how their child is doing in school and with his or her peers, siblings and parents, Dr. Marino said. They also should inquire about whether there are any problems with social cognition, attention and executive functioning.

If pediatricians determine further assessment is required, they can refer patients to the nearest cardiac neurodevelopmental program. There are more than 15 such programs nationwide, and the numbers are growing dramatically, Dr. Marino said.

“The reason these programs came up was because parents were trying to coordinate five or six different specialists, and it’s impossible,” he said. “So having a one-stop shop where parents can come in, receive a full evaluation, identify what the issues are and then have the program help plug them into local resources is extremely powerful.”  

In addition to working with families, Dr. Marino is dedicated to helping his colleagues understand what patients with congenital heart disease and their families face.

“The reason I’m so happy about being able to give this lecture,” he said, “is I want to take this opportunity and educate hundreds of pediatricians in hundreds of communities around the country.”

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