Early Literacy Intervention for Infants with Congenital Heart Disease: A Pilot Study

Background: Children with critical congenital heart disease (CHD) have an increased risk of adverse neurodevelopmental outcomes. Their parents may experience significant distress and feelings of helplessness. We implemented an early literacy program, Bonding with Books (BWB), in the pediatric intensive care unit (PICU) for infants undergoing heart surgery. This intervention aimed to facilitate parent-child interaction in the PICU & at home, encourage early language input, and encourage an early focus on neurodevelopment.

Methods: Primary caregivers of patients under one year admitted to the PICU with critical CHD between June 2020 and May 2021 were eligible for enrollment. Program participants were taught how language input impacts neurodevelopment, encouraged to read with their child (Figure 1), and given weekly age-appropriate books to read. Patients admitted during the four months prior to program onset and those not enrolled during hospitalization were eligible to be enrolled as controls. At enrollment, program participants were surveyed regarding language input and perceived parental efficacy, stress, and bonding. Four months after discharge, all caregivers were surveyed regarding their child’s hospital experience; their current sense of parental efficacy, stress and bonding; and literacy activities (reading, speaking, singing and rhyming) while hospitalized and after discharge.

Results: Thirteen families enrolled in the program and five completed follow up surveys. Seven control families completed follow up surveys. On average, parents in the BWB intervention were older, more highly educated, and had more children at home than did control parents. During hospitalization, program participants reported more frequent reading than controls. Both groups read more after discharge (Figure 2). All parents in both groups reported talking to their babies at least daily after discharge, and most parents reported singing (86-100%). Program participants demonstrated increased neurodevelopmental awareness citing “development” and “interaction” as reasons for reading. Program participants appreciated BWB as an avenue for “normal” parent-child interaction.

Conclusion: Early literacy interventions are feasible for inpatients with critical CHD. Early literacy interventions may increase reading to infants in the PICU, not just at home; make parents more aware of the neurodevelopmental needs of their child, are appreciated by parents, and provide avenues for typical infant –parent interaction. Larger studies are needed.