Most children and adolescents with a congenital heart defect do as well in school as their peers with healthy hearts. However, for those who also have microcephaly, a "normal" school career is a much higher hurdle. This is shown by the results of the research work of the Competence Network for Congenital Heart Defects, which was recently awarded the 2024 Science Prize by the German Society for Pediatric Cardiology and Congenital Heart Defects (DGPK). The register-based study, led by DHZC specialist Constanze Pfitzer, is the first comprehensive investigation of the relationship between microcephaly in congenital heart defects and school performance.

Microcephaly and Severity of the Congenital Heart Defect

In the study, 12.7 percent of children and adolescents with congenital heart defects were affected by microcephaly. The occurence of microcephaly was related to the severity of the congenital heart defect. Well over a third (35.6 percent) of the children and adolescents with small head circumference had a severe congenital heart defect. "Children with microcephaly had a significantly increased risk of impaired school development. At the same time, there is much to suggest that targeted early support can counteract educational and psychosocial disadvantages," says Constanze Pfitzer, summarizing the results.

Differences in Support and Schooling

Just over half of the children with congenital heart defects and microcephaly (51.2 percent) attended regular primary school. In contrast, 89.9 percent of children with congenital heart defects without microcephaly attended regular primary school. There were also large differences in secondary school attendance. Among children without microcephaly, almost one in two (48.3 percent) went on to grammar school. The proportion of children and adolescents in this group who attended specialized schools was 3.3 percent.

In contrast, one in seven of the microcephalic patients attended a grammar school (14.3 percent), while eight times as many (26.4 percent) attended a special education school. "At the same time, the vast majority of microcephalic patients with congenital heart defects received targeted developmental support at an early age. Among other things, this may have contributed to the fact that more than half were able to attend regular primary school and a small proportion also attended grammar school," says Constanze Pfitzer.

Psychosocial Impairments are More Likely to Occur

As part of their study, the researchers conducted an online survey of 750 participants in the National Registry for Congenital Heart Defects and their guardians about their academic development. The analysis of the survey results and the medical data also showed that children and adolescents with congenital heart defects and microcephaly suffer more frequently from psychosocial impairments than patients without microcephaly: "The proportion of children and adolescents being treated for ADHD, depression, anxiety, learning, or speech disorders was twice as high in microcephalic patients," says psychologist Paul Helm from the National Register for Congenital Heart Defects. The researchers say there is an urgent need to provide targeted, individualized support and therapy to young patients even before they start school.

Early Detection Is Key

"In our society, people with cognitive impairments often find it difficult to develop their individual abilities as independently as possible and at their own pace as possible," observes Ulrike Bauer, Managing Director of the National Register and Competence Network for Congenital Heart Defects. Early detection of microcephaly is therefore crucial: "Parents should be enabled and encouraged as early as possible to consider and respond to their children's special abilities and questions when choosing a school and making use of support programmes."

Raise Problem Awareness

The researchers strongly recommend paying special attention to the development of the head circumference during check-ups for children with congenital heart defects. Constanze Pfitzer is therefore also grateful for the award from the DGPK: "We are very pleased if the Science Prize raises awareness of this particular problem and possible solutions." The official award ceremony took place during the opening event of the 56th Annual Conference of the DGPK on February 17th, 2024.

Further press materials

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