New MIDB Study Offers First Look at Early Development in Children With ACC

A new study in Pediatrics offers providers and families much-needed insight into the early development of children born with agenesis of the corpus callosum (ACC)—a congenital brain condition in which the structure connecting the two sides of the brain is partially or completely missing.

This research is led by Lauren Haisley, PhD, LP, a member of the Masonic Institute for the Developing Brain (MIDB) and faculty in the Department of Pediatrics at the University of Minnesota Medical School, and Jed Elison, PhD, a member of MIDB and faculty in the Institute of Child Development at the University of Minnesota College of Education and Human Development and the Department of Pediatrics.

ACC is one of the most common brain malformations, but until now, little has been known about what early childhood looks like for these children—especially in cases where no other brain differences are present.

Researchers interviewed parents about their child’s adaptive functioning, which tracks adaptive skills such as communication, motor abilities, daily living, and socialization in children with ACC at 6, 12, 18, and 24 months. In collaboration with the Infant Brain Imaging Study (IBIS) Network and experts at the University of South Carolina and the California Institute of Technology, Haisley and Elison then compared these results to those of children with Down Syndrome, Fragile X, and elevated likelihood for autism, as well as typically developing children.

By 24 months, 29% of children with ACC showed delays in at least one domain—most often in communication and motor skills. Compared to typically developing peers, children with ACC showed lower communication by 6 months, motor delays by 12 months, and reduced daily living skills by 18 months. Social skills, however, remained on par with their peers throughout the first two years.

“Families often receive an ACC diagnosis during pregnancy, but until now there’s been little information to guide what comes next,” Haisley said. “These findings help providers give clearer guidance, and help parents know what to expect and how to advocate for early support.”

The findings highlight the tangible value of NIH sponsored research at the University of Minnesota, empowering providers and parents with empirically derived data to help children who need extra support.

This study was supported by funding from the National Institutes of Health R01 HD092430 to L. Paul.