Optimizing neurodevelopmental outcomes following fetal diagnosis of congenital heart disease: a call for primary prevention neuropsychology

ABSTRACT

Critical congenital heart disease (CHD) presents a lasting threat to quality of life through its adverse impact on neurodevelopmental and psychosocial outcomes. As recognition of this threat has increased, so too has an appreciation for the role of pediatric neuropsychologists in supporting families affected by CHD. But there is more to offer these families than traditional neuropsychological services, which tend to focus on secondary/tertiary forms of prevention. Now that many children with CHD are diagnosed prenatally, it may be possible to begin mitigating CHD-related risks and promoting positive outcomes earlier than ever before. Through primary prevention-oriented fetal neuropsychological consultation, as well as close collaboration with allied specialists, pediatric neuropsychology has an opportunity to re-envision its typical borders and more familiar practice models; to forge early and enduring partnerships with families; and to help promote the best possible neurodevelopmental trajectories, beginning before children are even born. In this conceptual review, we survey and integrate evidence from developmental science, developmental origins of health and disease, maternal-fetal medicine, and cardiac neurodevelopmental literatures, along with current practice norms, arriving ultimately at two central conclusions: 1) there is an important role to fill on multidisciplinary teams for the pediatric neuropsychologist in fetal cardiac care and 2) role expansion (e.g., through valuing broader-based training, flexing more generalist skills) can likely improve neuropsychological outcomes earlier than has been standard for pediatric neuropsychologists. Such a reimagining of our practice may be considered primary prevention neuropsychology. Implications for care in various settings and pragmatic barriers to implementation are discussed.

KEYWORDS:

• Cardiac
• developmental origins of health and disease
• fetal origins of health and disease
• maternal-fetal health
• prevention science

Acknowledgments

The authors would like to thank Jane Holmes Bernstein for her thoughtful comments on earlier versions of this paper.

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No potential conflict of interest was reported by the author(s).

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Funding

The author(s) reported there is no funding associated with the work featured in this article.