title: Surviving with trisomy 13: Provider and parent perspectives and the role of the pediatric palliative care program.
abstract: Trisomy 13 typically denotes an overall poor prognosis in the setting of multisystem anomalies. Through a provider and parent perspective, this case illustrates the benefit of hope, communication, and teamwork through the integration of a palliative care team in the care of a medically complex child with trisomy 13, resulting in enhance survival and perceived quality of life for patient and family. © 2016 Wiley Periodicals, Inc.
authors.affiliation: Department of Hospice and Palliative Medicine, UCSF Fresno, Fresno, California.
authors.forename: Duc
authors.initials: D
authors.lastname: Chung
authors.affiliation: UCSF Benioff Children's Hospital, San Francisco, California.
authors.forename: Kristina
authors.initials: K
authors.lastname: Haynes
authors.affiliation: University of California, San Francisco, California.
authors.forename: Russell
authors.initials: R
authors.lastname: Haynes
mesh_terms: D002675:Child, Preschool; D025063:Chromosome Disorders / Q000453:epidemiology / Q000401:mortality* / Q000628:therapy; D002882:Chromosomes, Human, Pair 13; D006282:Health Personnel; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D033183:Interdisciplinary Communication; D010166:Palliative Care; D010290:Parents; D014314:Trisomy; D000073839:Trisomy 13 Syndrome
keywords: palliative care