Implementation of a routine developmental follow-up program for children with congenital heart disease: early results.

Objective: To describe the implementation of a routine developmental follow-up program for children with congenital heart disease, summarize the developmental outcomes of the first clinic visits of the referred patients, and determine what factors predict variability in early developmental outcomes.

Design: Infants with congenital heart disease who had cardiac surgery within the first 30 days of life, had a cyanotic lesion (with or without surgery) or were believed to be at risk for developmental delay due to comorbid conditions or perioperative complications such as seizures or stroke were referred to the program as part of standard clinical care. Patients were evaluated using the Bayley Scales of Infant and Toddler Development-III. This study reports results from 95 patients (January 2007-October 2009) who had their first developmental follow-up visit at less than 1 year of age.

Results:   Patients were 7.2 ± 1.2 months at their first evaluation. Bayley scores (mean/standard deviation) for the entire group were: Cognitive 100.8 ± 11.9; Language 96.3 ± 12.7; and Motor 88.6 ± 18.6. Scores for language and motor achievement were significantly lower than population norms. 44% of children had at least one low score (defined as > 1 standard deviation below the mean). Of children meeting state criteria for early intervention services, 31% were not receiving any early intervention services. Risk factors for worse developmental outcomes (P < .05) included more open heart procedures, the presence of additional medical/genetic conditions, and the need for supplemental tube feedings. Developmental outcomes were not significantly related to gestational age, prenatal diagnosis, diagnostic category, or age at first surgery.

Conclusions: Implementation of a routine developmental follow-up program for congenital heart disease patients is possible and useful in identifying those patients who would benefit most from early intervention.