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Communicating with parents of children with trisomy 13 or 18 who seek cardiac interventions

Published online by Cambridge University Press:  19 November 2020

Meaghann S. Weaver*
Affiliation:
Children’s Hospital and Medical Center Omaha, Division of Pediatric Palliative Care – Hand in Hand, Omaha, NE, USA
John Lantos
Affiliation:
Children’s Mercy Kansas City and School of Medicine, University of Missouri-Kansas City, Kansas City, MO, USA
Kelly Hauschild
Affiliation:
Children’s Hospital and Medical Center Omaha, Division of Cardiothoracic Surgery, Omaha, NE, USA
James Hammel
Affiliation:
Children’s Hospital and Medical Center Omaha, Division of Cardiothoracic Surgery, Omaha, NE, USA
Nicole Birge
Affiliation:
Children’s Hospital and Medical Center Omaha, Division of Neonatology, Omaha, NE, USA
Annie Janvier
Affiliation:
Department of Pediatrics, Bureau de l’Éthique Clinique, Université de Montréal, Montréal, QC, Canada Division of Neonatology, Research Center, Clinical Ethics Unit, Palliative Care Unit, Unité de recherche en éthique clinique et partenariat famille, CHU Sainte-Justine, Montréal, QC, Canada
*
Author for correspondence: Dr M. S. Weaver, MD, MPH, Division of Pediatric Palliative Care, Children’s Hospital and Medical Center, Omaha 68114, NE. Tel: 402-955-5432. E-mail: meweaver@childrensomaha.org

Abstract

This case report shares the story of a family who sought care elsewhere after their daughter was denied cardiac surgery in their home state because she had trisomy 18. This case report recommends case-by-case assessment of cardiac surgical interventions for children with trisomy 13 or 18 as informed by review of goals, assessment of comorbidities, and literature-informed practice. Coordinated care planning and interdisciplinary communication are relevant in cardiac surgical considerations for children with these underlying genetic conditions.

Type
Brief Report
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

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