Developmental Impairments in Children with Congenital Heart Defects: : A prospective case-cohort study

With the advances in congenital cardiac surgery and medical management in recent decades, mortality rates for congenital heart defects (CHD) have declined remarkably. As the number of CHD survivors has increased, there is a growing focus on developmental impairments. Developmental impairments within a variety of developmental domains have been reported in school-age children with CHD. Less is known about the occurrence and persistence of developmental impairments in early childhood in children with CHD. The aim of this dissertation was therefore to study developmental impairments during the first three years of life in children with CHD. For this purpose, data from the Norwegian Mother and Child Cohort Study (MoBa), conducted by the Norwegian Institute of Public Health, was linked with a nationwide medical CHD registry. Children with different severity of CHD were compared with children without CHD on developmental impairments in the motor, communication, and social domains. All information on child development was reported by mothers in MoBa questionnaires. For the age span under study we found important differences between children with CHD and the controls. In early infancy two groups stood out as being particularly at risk for developmental impairments: Children with severe CHD showed higher odds for impairments in gross and fine motor skills. Children with CHD and comorbidity showed developmental impairments across gross motor, fine motor, and social domains. At age 18 months the same two groups differed from controls in levels of symptoms of communication impairments and social impairments. The largest differences from controls were found in children with CHD and comorbidity. At 3 years of age children with severe CHD had higher odds of both gross motor and communication impairments compared with controls. Children with mild and moderate CHD had higher odds of gross motor impairments but did not otherwise differ from controls. Predictors of impairments identified in children with severe CHD were: previous developmental impairments, smaller head circumference at birth, small for gestational age, and maternal distress. These findings are important for our understanding of early development in children with CHD. They underline the importance of early attentiveness to developmental impairments and the importance of considering patient-specific conditions at birth for providing individualized, targeted therapeutic strategies that may improve developmental outcomes in children with CHD