Abstract

Children with trisomy 13 and 18 (previously deemed “incompatible with life”) are living longer, warranting a comprehensive overview of their unique comorbidities and complex care needs. This Review Article provides a summation of the recent literature, informed by the study team's Interdisciplinary Trisomy Translational Program consisting of representatives from: cardiology, cardiothoracic surgery, neonatology, otolaryngology, intensive care, neurology, social work, chaplaincy, nursing, and palliative care. Medical interventions are discussed in the context of decisional-paradigms and whole-family considerations. The communication format, educational endeavors, and lessons learned from the study team's interdisciplinary care processes are shared with recognition of the potential for replication and implementation in other care settings.

Original languageEnglish (US)
Pages (from-to)966-977
Number of pages12
JournalAmerican Journal of Medical Genetics, Part A
Volume185
Issue number3
DOIs
StatePublished - Mar 2021

Keywords

  • interdisciplinary care
  • palliative care
  • trisomy 13
  • trisomy 18

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

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