Children with congenital heart defects usually keep up well at school. Many of them even graduate from high school. "Last but not least, this has to do with targeted support, which can compensate for a number of things, including when operations and rehab stays make it difficult for children to attend school continuously," says Constanze Pfitzer, a physician at the German Heart Institute in Berlin. However, the challenges are different for children with impaired body growth and a small head circumference, also known as microcephaly. This is shown by the results of a first study under her leadership, which examined the academic development of affected children.

Severe Congenital Heart Defects Favor Microcephaly

For the scientific analysis of the relationship between microcephaly and school career, the research team led by Constanze Pfitzer was able to draw on the cohort of the PAN-KU study at the Competence Network for Congenital Heart Defects from the National Registry for Congenital Heart Defects, which followed the large PAN study. "Most studies examining children's physical development focus on body weight and body length. The PAN-KU study at the Competence Network for Congenital Heart Defects is one of the first comprehensive studies that also took head circumference into account, which is important for assessing neurological development," explains Constanze Pfitzer. Her new study reveals that microcephaly, which is primarily associated with severe congenital heart defects, can have a major impact on the academic development of children and adolescents.

Mental Illness More Than Twice as Common

In the comprehensive PAN-KU cohort, one in eight children with a congenital heart defect is affected by microcephaly. The fact that the head malformation can be accompanied by developmental delays and cognitive impairments is also confirmed by the study of the research team led by Constanze Pfitzer. "It was striking that, compared to children with congenital heart defects without microcephaly, those affected were more than twice as likely to be treated for attention deficit disorder, depression, anxiety disorder, learning disorder or speech disorder," says the prospective pediatric cardiologist. Sixty-seven percent of microcephaly patients suffered from such concomitant disorders, compared to 29.8 percent of children without the head malformation.

Significant Differences in Support and School Career

A survey linked to the study showed that most children with a head malformation (85.7 percent) received targeted developmental support at an early age, while this was the case for less than half of the children without microcephaly (47.6 percent). Both groups started school at around six years of age. At 89.9 percent, most of the children without microcephaly started in a regular elementary school. In contrast, only slightly more than half (51.6 percent) of the children with this disorder started in this type of school.

14.3 Percent Attend a Grammar School

There was also a large difference in secondary schools. Nearly every second child with a congenital heart defect without a head malformation went to grammar school (48.3%). The proportion of students in this group who attended a specialized school was 3.3 percent. In contrast, one in seven children with microcephaly attended a grammar school (14.3 percent), while eight times as many (26.4 percent) attended a special education school. More than half of the children and adolescents (52.7%) were receiving support for learning difficulties. In the group of patients without microcephaly, only just over a fifth (21.6%) were receiving such services.

Hardly any Differences in School Grades

In terms of their academic performance, children with and without microcephaly do about equally well. Children with microcephaly also did not differ significantly in the number of class repetitions from their peers without this malformation. The period of absence from school for most children with microcephaly (82 percent) was no more than one month. In this sample, the academic level of the parents had no discernible influence on the types of primary and secondary school attended, the frequency of repeating a grade, or the use of support measures.

Further Intensive Research Needed

"Microcephaly shows an overall increased risk of impaired school development. At the same time, we have quite encouraging results with regards to school performance," Constanze Pfitzer classifies. "Which physical mechanisms are behind the clinically identified developmental delays is still under investigation. It is assumed that prenatal impairments of the blood circulation and a genetic link between heart and brain development are important reasons. At the same time, more intensive research is required on other causes."

Expand Routine Screening, Promote Individual Abilities

The scientists recommend including measurement of head circumference in routine examinations of infants and children with congenital heart defects so that more targeted intervention and support can be provided in the event of microcephaly. "In our performance-oriented society, it is often made difficult for people with cognitive impairments to develop their individual abilities as self-determinedly as possible and at their own pace," observes Ulrike Bauer, executive director of the National Registry and the Competence Network for Congenital Heart Defects. This makes it even more important to make the diagnosis early on, she says. "Parents should be specifically enabled and encouraged as early as possible to pay attention to and respond to their children's special abilities. Especially when it comes to choosing a school and support programs, the individual talents and questions of the children should be considered first and foremost," advises Ulrike Bauer.