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Am J Perinatol 2017; 34(09): 887-894
DOI: 10.1055/s-0037-1600912
Original Article
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA

Transitions in Care for Infants with Trisomy 13 or 18

Jacquelyn Patterson
1   Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina
,
Genevieve Taylor
1   Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina
,
Melissa Smith
1   Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina
,
Sarah Dotters-Katz
2   Department of Obstetrics and Gynecology, University of North Carolina School of Medicine, Chapel Hill, North Carolina
,
Arlene M. Davis
3   Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina
,
Wayne Price
1   Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, North Carolina
› Author Affiliations
Further Information

Publication History

17 November 2016

09 February 2017

Publication Date:
16 March 2017 (online)

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Abstract

Background and Objectives The 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 Methods This 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.

Results In 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.

Conclusion The spectrum of care for infants with T13 or T18 illustrates the need for individualized counseling that is on-going, goal directed, collaborative, and responsive.

Keywords

trisomy 13 - trisomy 18 - palliative care
 

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