Establishing a neurodevelopmental follow up program for neonates with complex congenital heart disease and ECLS survivors-our first year experience

Abstract

Background: Children with congenital heart disease (CHD) are at higher risk of neurodevelopmental disability when compared with the general population. Attention is now directed towards understanding neurodevelopmental disability in survivors. Methods: Neonates born after 1st January 2013 with Transposition of the Great Arteries undergoing Arterial Switch, complex CHD requiring a Norwood procedure and children who received ECLS were prospectively enrolled into the program. 21 were eligible for one or more assessments during the first year. Demographic and anthropometrical data collection and Bayley Scales of Infant and Toddler Development Third Edition (Bayley-III) assessments were performed. Results: 21 infants had neurodevelopmental assessments at 4-6mths and 8 infants received a second assessment at 12 months. At 4-6 months, 18/21 infants were performing at average or above for all major domains; 3/21 infants scored in the below average range across one or more domains. At 12 months one infant performed in the below average range across 7/8 domains. The remaining infants were all performing in the average or above range across 7 or more domains. Whilst the majority of children were receiving neurodevelopmental intervention at 4-6 months (19/21), we identified 2 infants at this time and 1 infant at 12 months requiring further neurodevelopmental intervention and facilitated referral to appropriate services. Conclusion: Ongoing neurodevelopmental assessment in this high risk group of children is essential to ensure timely neurodevelopmental intervention.L721035472015-12-10 <br />