Heading Off Developmental Delays In Children with Congenital Heart Disease

As children with congenital heart disease live longer, more is being learned about the impact of early heart conditions and the procedures used to treat them. One discovery is that these children are at greater risk for developmental delays, ranging from speech delays to cognitive impairment.

In the fall of 2013, UVA Children’s Hospital launched an effort to head off these developmental challenges in their earliest stages. The Neuro-Cardiac Clinic, a collaboration between the divisions of Pediatric Cardiology and Developmental Pediatrics, provides access to a neurodevelopmental assessment and, if needed, direct referrals to the support services that can further a child’s ability to grow and succeed.

“We know that, based on past studies of conditions that cause developmental delays, the sooner you intervene, the better outcomes you will have,” says cardiology fellow Mark Michael, DO.

Developmental pediatrician Rebecca Scharf, MD, MPH, now evaluates the infants who undergo major cardiac surgery at UVA. “By seeing children in the hospital before they go home, we are better able to connect with the patient, and we are more knowledgeable about their medical and developmental conditions when we follow the children as outpatients. Treatment is improved because of the open collaboration between cardiology and developmental pediatrics.”

“We have an established protocol with all of our patients,” says Michael. “When they have heart surgery here, they will receive an evaluation by the Neuro-Cardiac Clinic and families will be given information on the importance of developmental monitoring over time.”

With ongoing assessments — up to age five or beyond depending on the patient — Scharf is able to recognize signs of delay in the following areas: language, gross motor skills, fine motor skills, overall cognition and socioemotional growth. If a concern is identified, patients have access to the vast resources of UVA Children’s Hospital, including speech/language, physical and occupational therapy, nutritionists, educators and others.

Although infants and young children have been the clinic’s primary patients thus far, older children who had heart surgery early in life and are now showing signs of developmental delay also may be referred to the clinic. “Depending on the child’s needs, we can recommend in-school therapists or other resources for older kids,” says Michael.

The Neuro-Cardiac Clinic will be transitioned from Kluge Children’s Rehabilitation Center to the Battle Building later this summer. It will be located adjacent to the pediatric cardiology clinics.