Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome.

Creator(s)

Stephanie Kukora
Janice Firn
Naomi Laventhal
Christian Vercler
Bryanna Moore, Children's Mercy Hospital
John Lantos, Children's Mercy HospitalFollow

Document Type

Article

Publication Date

5-2019

Identifier

DOI: 10.1542/peds.2018-3779

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.

Journal Title

Pediatrics

Volume

143

Issue

5

MeSH Keywords

Clinical Decision-Making; Ethics Consultation; Fatal Outcome; Humans; Hypoplastic Left Heart Syndrome; Infant; Male; Parents; Social Media; Trisomy 18 Syndrome

Keywords

Clinical Decision-Making; Ethics Consultation; Fatal Outcome; Hypoplastic Left Heart Syndrome; Parents; Social Media; Trisomy 18 Syndrome

Recommended Citation

Kukora S, Firn J, Laventhal N, Vercler C, Moore B, Lantos JD. Infant With Trisomy 18 and Hypoplastic Left Heart Syndrome. Pediatrics. 2019;143(5):e20183779. doi:10.1542/peds.2018-3779