Neurodevelopmental Outcomes In Children with Congenital Heart Disease and the Importance of Dedicated Follow up Programs

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Background: Due to numerous risk factors and increased survival of children with congenital heart disease (CHD) neurodevelopmental delay is the most common, well researched complication. Many studies have documented the importance of implementing a dedicated CHD follow-up program and creating a medical home. 

Objective: To characterize outcomes of infants with CHD and to examine the feasibility of using the established structure and services of a NICU follow up clinic to follow children's developmental progress. 

Methods: A retrospective review of neurodevelopmental outcomes at 1 year of infants with varying congenital heart lesions followed in the NYU Neonatal Collaborative Care Program. Infants with CHD were referred at discharge from the cardiac intensive care unit in a collaborative approach between Neonatology, Pediatric Cardiology, and Cardiothoracic Surgery. Infants underwent developmental assessment using Baylely Scales of Infant Toddler Development-III (BSID-III) at 12-months.

Results: 124 patients with CHD were referred to and longitudinally followed from September 2013 through November 2018. A total of 72 infants were included in this review, who had cardiac surgery within the first year of life and underwent BSID-III at the 12-month visit. When stratified by Cardiac STAT class, both motor composite and scaled scores were noted to decrease with increasing severity of cardiac lesion. Evaluation of neurodevelopment led to 44 (61%) infants being referred to and receiving services and 15 (21%) newly referred at the 12-month visit. 

Conclusion: Infants with CHD continue to show concerns regarding motor delays in the first year of life. Utilizing existing resources and personnel in established NICU developmental follow up programs can ensure longitudinal developmental assessment and early referral to appropriate services.

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