Interdisciplinary care of children with trisomy 13 and 18

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 Interdiscipli...

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Bibliographic Details
Published in:American journal of medical genetics. Part A 2021-03, Vol.185 (3), p.966-977
Main Authors: Weaver, Meaghann S., Anderson, Venus, Beck, Jill, Delaney, Jeffrey W., Ellis, Cynthia, Fletcher, Scott, Hammel, James, Haney, Suzanne, Macfadyen, Andrew, Norton, Bridget, Rickard, Mary, Robinson, Jeffrey A., Sewell, Ryan, Starr, Lois, Birge, Nicole D.
Format: Article
Language:English
Subjects:
Children
Heart surgery
Interdisciplinary aspects
interdisciplinary care
Nursing
palliative care
Patau's syndrome
Trisomy
trisomy 13
trisomy 18
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Summary: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.
ISSN:1552-4825
1552-4833
DOI:10.1002/ajmg.a.62051