title: Transitions in Care for Infants with Trisomy 13 or 18.
abstract: Background and ObjectivesThe scope of interventions offered to infants with trisomy 13 (T13) or trisomy 18 (T18) is increasing. We describe the spectrum of care provided, highlighting transitions in care for individual patients.Patients and MethodsThis is a single-center, retrospective cohort of infants with T13 or T18 born between 2004 and 2015. Initial care was classified as comfort care or intervention using prenatal counseling notes. Transitions in care were identified in the medical record.ResultsIn this study, 25 infants were divided into two groups based on their care: neonates who experienced no transition in care and neonates who experienced at least one transition. Eleven neonates experienced no transition in care with 10 receiving comfort care. Fourteen neonates experienced at least one transition: three transitioned from comfort care to intervention and 11 from intervention to comfort care. The three initially provided comfort care were discharged home with hospice and readmitted. Among the 11 cases who transitioned from intervention to comfort care, 9 transitioned during the birth hospitalization, 6 had no prenatal suspicion for T13 or T18, and 5 experienced elective withdrawal of intensive care.ConclusionThe spectrum of care for infants with T13 or T18 illustrates the need for individualized counseling that is on-going, goal directed, collaborative, and responsive.
authors.affiliation: Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina.
authors.forename: Jacquelyn
authors.initials: J
authors.lastname: Patterson
authors.affiliation: Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina.
authors.forename: Genevieve
authors.initials: G
authors.lastname: Taylor
authors.affiliation: Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina.
authors.forename: Melissa
authors.initials: M
authors.lastname: Smith
authors.affiliation: Department of Obstetrics and Gynecology, University of North Carolina School of Medicine, Chapel Hill, North Carolina.
authors.forename: Sarah
authors.initials: S
authors.lastname: Dotters-Katz
authors.affiliation: Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina.
authors.forename: Arlene M
authors.initials: AM
authors.lastname: Davis
authors.affiliation: Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina.
authors.forename: Wayne
authors.initials: W
authors.lastname: Price
mesh_terms: D016208:Databases, Factual; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D009657:North Carolina / Q000453:epidemiology; D010166:Palliative Care; D010351:Patient Discharge; D012189:Retrospective Studies; D000069341:Transitional Care; D000073839:Trisomy 13 Syndrome / Q000628:therapy*; D000073842:Trisomy 18 Syndrome / Q000628:therapy*