Medical and surgical interventions and outcomes for infants with trisomy 18 (T18) or trisomy 13 (T13) at children's hospitals neonatal intensive care units (NICUs)

Krishna Acharya; Steven R Leuthner; Isabella Zaniletti; Jason Z Niehaus; Christine E Bishop; Carl H Coghill; Ankur Datta; Narendra Dereddy; Robert DiGeronimo; Laura Jackson; Con Yee Ling; Nana Matoba; Girija Natarajan; Sujir Pritha Nayak; Amy Brown Schlegel; Jamie Seale; Anita Shah; Julie Weiner; Helen O Williams; Monica H Wojcik; Jessica T Fry; Kevin Sullivan; Palliative Care and Ethics Focus Group of the Children’s Hospital Neonatal Consortium (CHNC)

doi:10.1038/s41372-021-01111-9

Medical and surgical interventions and outcomes for infants with trisomy 18 (T18) or trisomy 13 (T13) at children's hospitals neonatal intensive care units (NICUs)

J Perinatol. 2021 Jul;41(7):1745-1754. doi: 10.1038/s41372-021-01111-9. Epub 2021 Jun 10.

Authors

Krishna Acharya^{1

2}, Steven R Leuthner^{3

4}, Isabella Zaniletti⁵, Jason Z Niehaus^{6

7}, Christine E Bishop^{8

9}, Carl H Coghill^{10

11}, Ankur Datta^{12

13}, Narendra Dereddy^{14

15}, Robert DiGeronimo^{16

17}, Laura Jackson^{8

9}, Con Yee Ling^{18

19}, Nana Matoba^{12

13}, Girija Natarajan^{20

21}, Sujir Pritha Nayak^{22

23}, Amy Brown Schlegel^{24

25}, Jamie Seale²⁶, Anita Shah^{27

28}, Julie Weiner^{29

30}, Helen O Williams^{31

32}, Monica H Wojcik^{33

34}, Jessica T Fry^{12

13}, Kevin Sullivan^{35

36}; Palliative Care and Ethics Focus Group of the Children’s Hospital Neonatal Consortium (CHNC)

Collaborators

Palliative Care and Ethics Focus Group of the Children’s Hospital Neonatal Consortium (CHNC):
Anthony Piazza, Gregory Sysyn, Carl Coghill, Ajay Talati, Anne Hansen, Tanzeema Houssain, Karna Murthy, Gustave Falciglia, Beth Haberman, Kristina Reber, Rashmin Savani, Theresa Grover, Girija Natarajan, Annie Chi, Yvette Johnson, Gautham Suresh, William Engle, Eugenia Pallotto, Robert Lyle, Becky Rogers, Rachel Chapman, Jamie Limjoco, Priscilla Joe, Jacquelyn Evans, Michael Padula, David Munson, Suzanne Touch, Beverly Brozanski, Rakesh Rao, Amit Mathur, Victor McKay, Mark Speziale, Laurel Moyer, Billie Short, Kevin Sullivan, Con Yee Ling, Michael Uhing, Lynne Willett, Nicole Birge, Rajan Wadhawan, Elizabeth Jacobsen-Misbe, Robert DiGeronimo, Kyong-Soon Lee, Michel Mikhael

Affiliations

¹ Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA. kkacharya@mcw.edu.
² Division of Neonatology, Children's Hospital of Wisconsin, Milwaukee, WI, USA. kkacharya@mcw.edu.
³ Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.
⁴ Division of Neonatology, Children's Hospital of Wisconsin, Milwaukee, WI, USA.
⁵ Children's Hospitals Association, Lenexa, KS, USA.
⁶ Department of Pediatrics, Indiana University, Indianapolis, IN, USA.
⁷ Division of Neonatology, Riley Hospital for Children, Indianapolis, IN, USA.
⁸ Department of Pediatrics, University of Pittsburgh, Pittsburgh, PA, USA.
⁹ Division of Newborn Medicine, UPMC Children's Hospital, Pittsburgh, PA, USA.
¹⁰ Department of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA.
¹¹ Division of Neonatology, Children's of Alabama, Birmingham, AL, USA.
¹² Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
¹³ Division of Neonatology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA.
¹⁴ Department of Pediatrics, University of Central Florida, Orlando, FL, USA.
¹⁵ Division of Neonatology at Advent Health for Children, Orlando, FL, USA.
¹⁶ Department of Pediatrics, University of Washington, Seattle, WA, USA.
¹⁷ Division of Neonatology, Seattle Children's Hospital, Seattle, WA, USA.
¹⁸ Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.
¹⁹ Division of Neonatology at Primary Children's Hospital, Salt Lake City, UT, USA.
²⁰ Department of Pediatrics, Central Michigan University, Detroit, MI, USA.
²¹ Division of Neonatology, Children's Hospital of Michigan, Detroit, MI, USA.
²² Department of Pediatrics UT Southwestern Medical Center, Dallas, TX, USA.
²³ Division of Neonatology at Children's Medical Center, Dallas, TX, USA.
²⁴ Department of Pediatrics, The Ohio State College of Medicine, Columbus, OH, USA.
²⁵ Division of Neonatology, Nationwide Children's Hospital, Columbus, OH, USA.
²⁶ Intermountain Healthcare and Primary Children's Hospital, Salt Lake City, UT, USA.
²⁷ Department of Pediatrics at University of California, Irvine, CA, USA.
²⁸ Division of Neonatology, Children's Hospital of Orange County, Orange, CA, USA.
²⁹ Department of Pediatrics at University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA.
³⁰ Division of Neonatology Children's Mercy - Kansas City, Kansas City, MO, USA.
³¹ Department of Pediatrics at the Emory University School of Medicine, Atlanta, GA, USA.
³² Division of Neonatology at Children's Healthcare of Atlanta, Atlanta, GA, USA.
³³ Divisions of Newborn Medicine and Genetics and Genomics, Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
³⁴ Boston Children's Hospital, Boston, MA, USA.
³⁵ Department of Pediatrics, Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA, USA.
³⁶ Division of Neonatology, Nemours/AI DuPont Hospital for Children, Wilmington, DE, USA.

Abstract

Objectives: To examine characteristics and outcomes of T18 and T13 infants receiving intensive surgical and medical treatment compared to those receiving non-intensive treatment in NICUs.

Study design: Retrospective cohort of infants in the Children's Hospitals National Consortium (CHNC) from 2010 to 2016 categorized into three groups by treatment received: surgical, intensive medical, or non-intensive.

Results: Among 467 infants admitted, 62% received intensive medical treatment; 27% received surgical treatment. The most common surgery was a gastrostomy tube. Survival in infants who received surgeries was 51%; intensive medical treatment was 30%, and non-intensive treatment was 72%. Infants receiving surgeries spent more time in the NICU and were more likely to receive oxygen and feeding support at discharge.

Conclusions: Infants with T13 or T18 at CHNC NICUs represent a select group for whom parents may have desired more intensive treatment. Survival to NICU discharge was possible, and surviving infants had a longer hospital stay and needed more discharge supports.

MeSH terms

Child
Hospitals, Pediatric*
Humans
Infant
Infant, Newborn
Intensive Care Units, Neonatal*
Retrospective Studies
Trisomy 13 Syndrome
Trisomy 18 Syndrome