Interdisciplinary care of children with trisomy 13 and 18

Am J Med Genet A. 2021 Mar;185(3):966-977. doi: 10.1002/ajmg.a.62051. Epub 2020 Dec 31.

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.

Keywords: interdisciplinary care; palliative care; trisomy 13; trisomy 18.

Publication types

  • Review

MeSH terms

  • Child Advocacy
  • Chromosomes, Human, Pair 18*
  • Clinical Decision-Making
  • Developmental Disabilities / genetics
  • Developmental Disabilities / therapy
  • Enteral Nutrition
  • Female
  • Fetal Monitoring
  • Heart Defects, Congenital / genetics
  • Heart Defects, Congenital / therapy
  • Humans
  • Infant Food
  • Infant Nutrition Disorders / prevention & control
  • Infant, Newborn
  • Intensive Care, Neonatal / methods
  • Interdisciplinary Communication
  • Life Expectancy
  • Male
  • Muscle Hypotonia / genetics
  • Muscle Hypotonia / therapy
  • Neoplasms / complications
  • Palliative Care / organization & administration*
  • Patient Care Team*
  • Prenatal Diagnosis
  • Professional-Family Relations
  • Trisomy 13 Syndrome* / diagnosis
  • Trisomy 13 Syndrome* / embryology
  • Trisomy 13 Syndrome* / therapy
  • Trisomy*