For children with heart disease, a risk of attention and behavior problems

Schoolchildren who required surgery as infants for congenital heart disease (CHD) run a significant risk of having problems with inattention and hyperactivity, and often require remedial services in school. “These children are at risk for academic and behavior problems, and our findings reinforce how important it is to provide them with ongoing follow-up and neurodevelopmental screening,” said study leader Amanda J. Shillingford, M.D., a pediatric cardiologist at The Children’s Hospital of Philadelphia.

The researchers, who reported their findings in the April issue of Pediatrics, studied a group of 109 children, aged five to 10, who had undergone cardiac surgery for complex congenital heart disease at Children’s Hospital when they were newborns. Of that group, 53 children-nearly half of them-were receiving remedial services at school, and 15 percent were in special education classrooms.

Based on questionnaire responses from their parents and teachers, although the majority of the children with CHD scored in the normal range, the rates of high-risk scores for inattention and hyperactivity were three to four times greater than those found in the general population.

Previous studies at The Children’s Hospital of Philadelphia and other centers found that school-aged children with complex CHD tended to have normal cognitive abilities but were at risk for problems in visual and motor skills, as well as impairments in speech, language and executive functioning (executive functioning refers to capacities for attention, planning, decision-making and problem-solving).

Each year, over 10,000 newborns in the U.S. have CHD severe enough to require surgery before they are one year of age. Advances in medical and surgical treatments have steadily improved survival rates for even the most complex conditions. One such condition is hypoplastic left heart syndrome, in which a severely underdeveloped left ventricle is unable to pump enough blood to the body. A series of three surgeries during the newborn and infant period is needed to correct this heart defect. Children with this and several other congenital heart conditions were included in the study.

“As survival rates have improved,” said Shillingford, “the important longer-term issue is quality of life for patients and their families as they reach school age and beyond. We hope our findings will help raise awareness among parents, teachers and physicians about the children’s risk of neurodevelopmental problems.” Shillingford added that a next step for researchers is to conduct larger, multicenter studies, with more formalized diagnostic tools, and to develop formalized follow-up protocols for these children. Such follow-up programs are currently being designed at Children’s Hospital.

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Shillingford’s co-authors, all from The Children’s Hospital of Philadelphia, are Gil Wernovsky, M.D.; Marianne M. Glanzman, M.D.; Richard F. Ittenbach, Ph.D.; Robert J. Clancy, M.D.; and J. William Gaynor, M.D.