Cardiac specialists have concentrated for many years on helping high-risk infants with complex congenital heart disease (CHD) to survive surgery. As advances in surgical and perioperative care have improved their success rates dramatically, researchers, clinicians, and families now are able to turn their attention to these children’s long-term outcomes.
The most common complication for children who undergo CHD surgery in infancy is neurodevelopmental disability. Previous research has shown that they have lower abilities with reasoning, learning, executive function, inattention and impulsive behavior, language skills, and social skills compared to the general pediatric population.
The International Cardiac Collaborative on Neurodevelopment (ICCON) Investigators looked at trends over a 14-year interval in neurodevelopmental outcomes for survivors of CHD surgery. Twenty-six institutions from six countries — the U.S., Canada, Austria, New Zealand, Japan, and Switzerland — submitted study participant data for the pooled analysis project. The study team evaluated 1,770 children born between 1996 and 2009 who underwent CHD surgery, which is the largest cohort reported to date.
The investigators assessed the study participants’ scores at age 14.5 months on the Bayley Scales Version 2, a standard series of measurements that examine multiple facets of child development. They reported that these scores were significantly lower than expected compared with the general population.
“We showed that over the last 15 years, despite all the improvements in care, we have really made very little progress in improving the long-term neurodevelopmental outcomes for these kids,” said J. William Gaynor, MD, first author of a Pediatrics article that reported the ICCON investigators’ results. “Once you’re past the excitement and stress of the operation, this is what parents really care about: Is my child going to need special education? Is my child going to have attention-deficit/hyperactivity disorder? Is she going to be able to have a job? Is he going to be able to have a family? That’s what we’re trying to answer.”
The ICCON investigators will continue their worldwide collaboration to study factors that may explain the lack of greater improvement in early neurodevelopmental outcomes over the study period. The study team already is gathering data to determine if there is any relationship between intraoperative management strategies and neurodevelopmental outcomes. Another possibility is that brain development in children with CHD is immature prior to birth.
“The data here is suggestive that if you’re going to make these kids better, we’ve got to make their brains better before they’re even born,” said Dr. Gaynor, who is an attending cardiothoracic surgeon at The Children’s Hospital of Philadelphia and associate professor of surgery at the University of Pennsylvania School of Medicine. “Our goal is that when you meet these kids, if you didn’t see the scar on their chests, you would not know that they had heart surgery because they’re completely like every other kid in every other way. We’re not there yet, but this is the type of research that we need to get us there.”
The pooled data analysis project was funded by a grant from the Mend-a-Heart Foundation.