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Children born with heart defects need early evaluation and ongoing follow-up for related developmental issues and disabilities, the American Heart Association urged.

High-risk kids need formal, periodic developmental and medical evaluations, according to the scientific statement, which was released online in Circulation: Journal of the American Heart Association with endorsement from the American Academy of Pediatrics.

"If we identify developmental problems earlier, we're going to help prevent issues from coming up in school that prevent these children from achieving their fullest potential," writing group co-chair Bradley S. Marino, MD, MPP, MSCE, of the Cincinnati Children's Hospital Medical Center, said in a press release.

"In the past, we were happy if they survived. Now, we want them to survive and thrive."

Complex congenital heart disease leads to a "distinctive pattern" of mild cognitive impairment, impaired social interaction, and problems with speech and language, inattention, impulsive behavior, and impaired executive function.

Many children who had cardiac surgery for congenital defects as an infant need tutoring, special education, physical, occupational, and speech therapy once they reach school age. A significant proportion need specialized services into adulthood, too.

Neurodevelopmental disorders can arise from the syndromes or genetic problems that gave rise to the congenital heart defect, but they also can be caused by the medical and surgical treatment required for it, or by poor circulation itself. Even the day-to-day stress of living with an ongoing, serious heart condition can contribute.

While all children with congenital heart defects need heightened surveillance and screening, certain groups need more.

Any child who got open heart surgery as a neonate or infant or who had a cyanotic heart lesion, even if it didn't require such early surgery, is at high risk, according to the statement. Any combination of the following was classified high-risk as well:

• Prematurity of less than 37 weeks' gestation
• Developmental delay recognized in infancy
• Suspected genetic abnormality or syndrome associated with developmental delay
• Any history of ventricular assist device use, extracorporeal membrane oxygenation (ECMO), or cardiopulmonary resuscitation
• Heart transplantation
• Prolonged hospitalization of at least 2 weeks
• Perioperative seizures related to congenital heart surgery
• Significant abnormalities on neuroimaging or microcephaly

These groups might benefit from referral to a formal developmental and medical evaluation (genetic testing, structural brain imaging, etc.) as well as periodic reevaluation at ages 12 to 24 months, 3 to 5 years, and 11 to 12 years, according to the statement.

These efforts should be coordinated through the child's "medical home," usually the primary care provider, and should involve shared managment plans and interaction with early intervention programs, schools, and other agencies, the statement noted.

From the American Heart Association:

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