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Pediatrics. 2019 May;143(5). pii: e20183779. doi: 10.1542/peds.2018-3779. Epub 2019 Apr 4.

Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome.

Author information

1
Center for Bioethics and Social Sciences in Medicine, skukora@med.umich.edu.
2
Division of Neonatal-Perinatal Medicine, Department of Pediatrics.
3
Center for Bioethics and Social Sciences in Medicine.
4
Division of Professional Education, Department of Learning Health Sciences, and.
5
Department of Surgery, University of Michigan, Ann Arbor, Michigan; and.
6
Children's Mercy Bioethics Center, Children's Mercy Hospital, Kansas City, Missouri.

Abstract

We present a case in which a fetal diagnosis of complex congenital heart disease and trisomy 18 led to a series of decisions for an infant who was critically ill. The parents wanted everything done. The surgeons believed that surgery would be futile. The parents publicized the case on social media, which led to publicity and pressure on the hospital. The case reveals the intersection of parental values, clinical judgments, ethics consultation, insurance company decisions about reimbursement, and social media publicity. Together, these factors complicate the already delicate ethical deliberations and decisions.

PMID:
30948683
DOI:
10.1542/peds.2018-3779
[Indexed for MEDLINE]

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