Interdisciplinary care of children with trisomy 13 and 18

Meaghann S Weaver; Venus Anderson; Jill Beck; Jeffrey W Delaney; Cynthia Ellis; Scott Fletcher; James Hammel; Suzanne Haney; Andrew Macfadyen; Bridget Norton; Mary Rickard; Jeffrey A Robinson; Ryan Sewell; Lois Starr; Nicole D Birge

doi:10.1002/ajmg.a.62051

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.

Authors

Meaghann S Weaver¹, Venus Anderson², Jill Beck³, Jeffrey W Delaney², Cynthia Ellis^{4

5}, Scott Fletcher^{2

6}, James Hammel⁷, Suzanne Haney⁸, Andrew Macfadyen⁹, Bridget Norton⁹, Mary Rickard¹⁰, Jeffrey A Robinson², Ryan Sewell¹¹, Lois Starr^{5

12}, Nicole D Birge¹³

Affiliations

¹ Division of Palliative Care, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
² Division of Cardiology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
³ Division of Oncology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁴ Division of Developmental Pediatrics, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁵ Munroe-Meyer Institute for Genetics and Rehabilitation, Omaha, Nebraska, USA.
⁶ Division of Cardiology, Department of Pediatrics, Creighton University, Omaha, Nebraska, USA.
⁷ Division of Cardiothoracic Surgery, Department of Surgery, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁸ Division of Child Advocacy, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
⁹ Division of Critical Care, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹⁰ Division of Neurology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹¹ Division of Otolaryngology, Department of Pediatrics, Children's Hospital and Medical Center and ENT Specialists PC, Omaha, Nebraska, USA.
¹² Division of Genetics, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.
¹³ Division of Neonatology, Department of Pediatrics, Children's Hospital and Medical Center and the University of Nebraska Medical Center, Omaha, Nebraska, USA.

PMID: 33381915
DOI: 10.1002/ajmg.a.62051

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*