Jane Newburger, MD, MPH, highlights neurodevelopmental gaps after infant heart surgery

In a recent interview with Contemporary Pediatrics, Jane W. Newburger, MD, MPH, Associate Chief for Academic Affairs at Boston Children's Hospital, highlighted the high rates of developmental diagnoses and service use after infant heart surgery, as well as the persistent gap between American Heart Association recommendations and real-world implementation of comprehensive evaluations.

Neurocognitive and psychological impairments are the most common long-term morbidities among children with complex congenital heart disease (CHD), making neurodevelopmental evaluation a critical component of care for infants who undergo heart surgery. Newburger explained, advances in cardiac surgery and medical management have dramatically improved survival. Decades ago, up to 90% of infants with critical CHD did not survive their first year of life. Today, most survive into childhood and adulthood. With this success, however, has come increased recognition of neurodevelopmental and psychosocial challenges that can persist across the lifespan.

Children with complex CHD are at greater risk for motor delays, including difficulties with walking and fine motor tasks such as writing, as well as expressive language impairments and academic struggles. They are more likely to require special education services and may experience ongoing neuropsychological and behavioral difficulties into adulthood.

In response, the American Heart Association (AHA) issued scientific statements in 2012 and again in 2024 recommending formal neurodevelopmental evaluations—not just routine screening questionnaires—for all children with CHD at key developmental stages: 12 to 24 months, 3 to 5 years, and again at approximately 11 to 12 years, with additional assessments as needed. Early intervention services, such as physical, occupational, and speech therapy, are also advised beginning soon after hospital discharge.

The 2024 AHA statement identified 3 high-risk groups: infants who undergo open heart surgery, children with persistent cyanosis (“always blue”), and those who undergo any cardiac intervention before the age of 18 years and have additional neurodevelopmental risk factors, including low socioeconomic status.

In the featured study, investigators examined publicly insured children who underwent cardiac surgery before 12 months of age and were followed through age 5 years. They assessed the prevalence of neurodevelopmental and neurologic diagnoses, related health care utilization, and risk factors for earlier diagnosis or therapy. By the first year of life, nearly 20% to 30% had at least 1 neurodevelopmental diagnosis, and almost 64% had received some form of developmental service. By age 5 years, half had at least 1 neurodevelopmental diagnosis, and nearly 83% had utilized related services.

More complex surgeries were strongly associated with earlier diagnoses and earlier service use. Hispanic and Black children were also more likely than White children to receive earlier diagnoses. Despite the high prevalence of need, comprehensive evaluations were uncommon: only 6.6% received a psychological or neuropsychological evaluation, and 8.5% had a comprehensive developmental evaluation—far below AHA recommendations.

The findings underscore a substantial gap between expert guidelines and real-world practice, highlighting the urgent need for better implementation of routine, formal neurodevelopmental assessments in high-risk CHD populations.

No relevant disclosures.

Reference

O’Meara D, Henson B, Rollins CK, et al. Neurodevelopment among publicly insured children in the first 5 years after infant heart surgery. JAMA Netw Open. 2026;9(2):e2556832. doi:10.1001/jamanetworkopen.2025.56832