Volume 43, Issue 5 p. 661-673
REVIEW

A guide to prenatal counseling regarding neurodevelopment in congenital heart disease

Fu-Tsuen Lee

Fu-Tsuen Lee

Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

Translational Medicine Program, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

Department of Physiology, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada

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Liqun Sun

Liqun Sun

Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

Translational Medicine Program, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

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Lindsay Freud

Lindsay Freud

Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

Translational Medicine Program, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

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Mike Seed

Corresponding Author

Mike Seed

Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

Translational Medicine Program, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

Department of Physiology, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada

Department of Diagnostic Imaging, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

Correspondence

Mike Seed, Division of Cardiology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, 555 University Avenue, Toronto, ON, M5G 1X8, Canada.

Email: [email protected]

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First published: 27 December 2022

Abstract

Advances in cardiac surgical techniques taking place over the past 50 years have resulted in the vast majority of children born with congenital cardiac malformations now surviving into adulthood. As the focus shifts from survival to the functional outcomes of our patients, it is increasingly being recognized that a significant proportion of patients undergoing infant cardiac repair experience adverse neurodevelopmental (ND) outcomes. The etiology of abnormal brain development in the setting of congenital heart disease is poorly understood, complex, and likely multifactorial. Furthermore, the efficacy of therapies available for the learning disabilities, attention deficit, and hyperactivity disorders and other ND deficits complicating congenital heart disease is currently uncertain. This situation presents a challenge for prenatal counseling as current antenatal testing does not usually provide prognostic information regarding the likely ND trajectories of individual patients. However, we believe it is important for parents to be informed about potential issues with child development when a new diagnosis of congenital heart disease is disclosed. Parents deserve a comprehensive and thoughtful approach to this subject, which conveys the uncertainties involved in predicting the severity of any developmental disorders encountered, while emphasizing the improvements in outcomes that have already been achieved in infants with congenital heart disease. A balanced approach to counseling should also discuss what local arrangements are in place for ND follow-up. This review presents an up-to-date overview of ND outcomes in patients with congenital heart disease, providing possible approaches to communicating this information to parents during prenatal counseling in a sensitive and accurate manner.

CONFLICT OF INTEREST

The authors have no conflict of interest.

DATA AVAILABILITY STATEMENT

Data sharing is not applicable to this article as no new data were created or analyzed in this study.