Abstract 10975: The Developmental Trajectory of Children with Congenital Heart Disease: The First 3 Years
Background: Children with congenital heart disease (CHD) are at risk for developmental delay (DD). Routine developmental follow-up to identify problems and ensure early intervention has been proposed as a means to improve outcomes.
Methods: This study summarizes the developmental trajectory from 6 to 36 months in children with CHD at risk for DD and seen in our developmental follow-up clinic from 2007-11. Parents consented to a data registry. The Bayley Scales of Infant Development III were used to assess cognitive (C), language (L) and motor (M) domains. DD was defined by scores >1 SD below mean (at-risk), and >2 SD (impaired). The domain trajectories were fit using fixed and random effects mixed models (slope and intercept) by subgroups.
Results: Data included 101 children with 3 or more visits (total visits = 402). Anatomy was single ventricle (1V) in 31, two ventricle (2V) in 68 and acquired disease in 2. Medical co-morbidities were present in 26%, and genetic syndromes (GS) in 20%; of these, 18/20 had 2V CHD. The estimated means for the entire group on C, L and M skills at 6 mo intervals (6-36 mo) were all within the low average range (85-100), except for M (84) at 6 mo. Most patients (76%) had DD in at least one domain at some point of assessment. Some children (18%) who were assessed as normal at 1 year of age were later found to have DD. Eligibility criteria for early intervention services were met in 41% of visits (165/402) and 82% of these children were receiving therapy. The trajectories of C, L and M scores are shown. Patients with 1V had normal and flat C and L trajectories; those with 2V or GS had declining trajectories. Patients with 1V and 2V had normalizing M trajectories; those with GS had unchanging low M scores.
Conclusions: For children with complex CHD, risk of DD changes over time; therefore, longitudinal surveillance is important. Risk in complex 2V children may be underappreciated. Further research is needed to evaluate the impact of routine follow-up and early intervention.
- © 2012 by American Heart Association, Inc.