Open Access

ARTICLE

Neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period

Samantha C. Butler^1,4, Anjali Sadhwani^1,4, Christian Stopp², Jayne Singer^1,3,4, David Wypij^2,5,6, Carolyn Dunbar‐Masterson², Janice Ware^1,3,4, Jane W. Newburger^2,5

1 Department of Psychiatry, Boston Children’s Hospital, Boston, Massachusetts
2 Department of Cardiology, Boston Children’s Hospital, Boston, Massachusetts
3 Developmental Medicine Center, Boston Children’s Hospital, Boston, Massachusetts
4 Department of Psychiatry, Harvard Medical School, Boston, Massachusetts
5 Department of Pediatrics, Harvard Medical School, Boston, Massachusetts
6 Department of Biostatistics, Harvard T.H. Chan School of Public Health, Boston, Massachusetts

* Corresponding Author: Samantha Butler, PhD, Boston Children’s Hospital, Enders Research Building, Room 107, 300 Longwood Ave, Boston, MA 02115. Email: . edu

Congenital Heart Disease 2019, 14(2), 236-245. https://doi.org/10.1111/chd.12686

Abstract

Objective: Mortality rates for children with congenital heart disease (CHD) have significantly declined, resulting in a growing population with associated neurodevelopmental disabilities. American Heart Association guidelines recommend systematic developmental screening for children with CHD. The present study describes results of inpatient newborn neurodevelopmental assessment of infants after open heart surgery.
Outcome measures: We evaluated the neurodevelopment of a convenience sample of high‐risk infants following cardiac surgery but before hospital discharge using an adaptation of the Newborn Behavioral Observation. Factor analysis examined relationships among assessment items and consolidated them into domains of development.
Results: We assessed 237 infants at a median of 11 days (interquartile range [IQR]: 7‐19 days) after cardiac surgery and median corrected age of 21 days (IQR: 13‐33 days). Autonomic regulation was minimally stressed or well organized in 14% of infants. Upper and lower muscle tone was appropriate in 33% and 35%, respectively. Appropriate response to social stimulation ranged between 7% and 12% depending on task, and state regulation was well organized in 14%. The vast majority (87%) required enhanced examiner facilitation for participation. Factor analyses of assessment items aligned into four domains of development (autonomic, motor, oral motor, and attention organization).
Conclusion: At discharge, postoperative infants with CHD had impairments in autonomic, motor, attention, and state regulation following cardiac surgery. Findings highlight the challenges faced by children with CHD relative to healthy peers, suggesting that neurodevelopmental follow‐up and intervention should begin early in infancy.

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