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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)

Journal of Perinatology volume 41, pages 1745–1754 (2021)Cite this article

Subjects

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.

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Fig. 1: Time trends in NICU admissions, number of infants receiving intensive vs. non-intensive treatment and percentage of surviving infants from 2010–16 (n = 467).
Fig. 2: Center variation in 3 treatment groups for infants with T13 or T18 in centers with >10 patients (n = 407).

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References

  1. Nelson KE, Hexem KR, Feudtner C. Inpatient Hospital Care of Children With Trisomy 13 and Trisomy 18 in the United States. Pediatrics 2012;129:869–76.

    Article  Google Scholar 

  2. Acharya K, Leuthner S, Clark R, Nghiem-Rao TH, Spitzer A, Lagatta J. Major anomalies and birth-weight influence NICU interventions and mortality in infants with trisomy 13 or 18. J Perinatol. 2017;37:420–6.

    Article  CAS  Google Scholar 

  3. Nelson KE, Rosella LC, Mahant S, Guttmann A. Survival and surgical interventions for children with trisomy 13 and 18. JAMA. 2016;316:420.

    Article  Google Scholar 

  4. Pallotto I, Lantos JD. Treatment decisions for babies with trisomy 13 and 18. HEC Forum. 2017;29:213–22.

    Article  Google Scholar 

  5. Guon J, Wilfond BS, Farlow B, Brazg T, Janvier A. Our children are not a diagnosis: the experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. Am J Med Genet Part A. 2014;164:308–18.

    Article  Google Scholar 

  6. Leuthner SR, Acharya K. Perinatal counseling following a diagnosis of trisomy 13 or 18: incorporating the facts, parental values, and maintaining choices. Adv Neonatal Care. 2020;20:204–15.

    Article  Google Scholar 

  7. Subramaniam A, Jacobs AP, Tang Y, Neely C, Philips JB, Biggio JR, et al. Trisomy 18: a single-center evaluation of management trends and experience with aggressive obstetric or neonatal intervention. Am J Med Genet. 2016;170:838–46.

    Article  CAS  Google Scholar 

  8. Janvier A, Farlow B, Barrington KJ. Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet Part C: Semin Med Genet. 2016;172:279–87.

    Article  Google Scholar 

  9. Winn P, Acharya K, Peterson E, Leuthner S. Prenatal counseling and parental decision-making following a fetal diagnosis of trisomy 13 or 18. J Perinatol. 2018;38:788–96.

    Article  Google Scholar 

  10. Murthy K, Dykes FD, Padula MA, Pallotto EK, Reber KM, Durand DJ, et al. The Children’s Hospitals Neonatal Database: an overview of patient complexity, outcomes and variation in care. J Perinatol. 2014;34:582–6.

    Article  CAS  Google Scholar 

  11. Billings KR, Rastatter JC, Lertsburapa K, Schroeder JW Jr. An analysis of common indications for bronchoscopy in neonates and findings over a 10-year period. JAMA Otolaryngol–Head Neck Surg. 2015;141:112–9.

    Article  Google Scholar 

  12. Swanson SK, Schumacher KR, Ohye RG, Zampi JD. Impact of trisomy 13 and 18 on airway anomalies and pulmonary complications after cardiac surgery. J Thorac Cardiovasc Surg. 2020;S0022-5223(20)32473-9.

  13. Fry JT, Matoba N, Datta A, DiGeronimo R, Coghill CH, Natarajan G, et al. Center, gestational age, and race impact end-of-life care practices at regional neonatal intensive care units. J Pediatr. 2020;217:86–91. e1

    Article  Google Scholar 

  14. Graham EM. Infants with trisomy 18 and complex congenital heart defects should not undergo open heart surgery. J Law Med Ethics. 2016;44:286–91.

    Article  Google Scholar 

Download references

Acknowledgements

We are indebted to the following institutions that serve the infants and their families, and these institutions also have invested in and continue to participate in the Children’s Hospital’s Neonatal Database (CHND). Jeanette Asselin, Beverly Brozanski, David Durand (ex officio), Francine Dykes (ex officio), Jacquelyn Evans (Executive Director), Theresa Grover, Karna Murthy (Chair), Michael Padula, Eugenia Pallotto, Anthony Piazza, Kristina Reber, and Billie Short are members of the Children’s Hospitals Neonatal Consortium, Inc. For more information, please contact: support@thechnc.org. The site sponsors/contributors for the CHND include:

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

Anthony Piazza35, Gregory Sysyn36, Carl Coghill37, Ajay Talati38, Anne Hansen39, Tanzeema Houssain39, Karna Murthy40, Gustave Falciglia40, Beth Haberman41, Kristina Reber42, Rashmin Savani43, Theresa Grover44, Girija Natarajan45, Annie Chi46, Yvette Johnson46, Gautham Suresh47, William Engle48, Eugenia Pallotto49, Robert Lyle50, Becky Rogers50, Rachel Chapman51, Jamie Limjoco52, Priscilla Joe53, Jacquelyn Evans54, Michael Padula54, David Munson54, Suzanne Touch55, Beverly Brozanski56, Rakesh Rao57, Amit Mathur57, Victor McKay58, Mark Speziale59, Laurel Moyer59, Billie Short60, Kevin Sullivan61, Con Yee Ling62, Michael Uhing63, Lynne Willett64, Nicole Birge64, Rajan Wadhawan65, Elizabeth Jacobsen-Misbe66, Robert DiGeronimo66, Kyong-Soon Lee67, Michel Mikhael68

Author information

Authors and Affiliations

  1. Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA

    Krishna Acharya & Steven R. Leuthner

  2. Division of Neonatology, Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Krishna Acharya & Steven R. Leuthner

  3. Children’s Hospitals Association, Lenexa, KS, USA

    Isabella Zaniletti

  4. Department of Pediatrics, Indiana University, Indianapolis, IN, USA

    Jason Z. Niehaus

  5. Division of Neonatology, Riley Hospital for Children, Indianapolis, IN, USA

    Jason Z. Niehaus

  6. Department of Pediatrics, University of Pittsburgh, Pittsburgh, PA, USA

    Christine E. Bishop & Laura Jackson

  7. Division of Newborn Medicine, UPMC Children’s Hospital, Pittsburgh, PA, USA

    Christine E. Bishop & Laura Jackson

  8. Department of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA

    Carl H. Coghill

  9. Division of Neonatology, Children’s of Alabama, Birmingham, AL, USA

    Carl H. Coghill

  10. Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Ankur Datta, Nana Matoba & Jessica T. Fry

  11. Division of Neonatology, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Ankur Datta, Nana Matoba & Jessica T. Fry

  12. Department of Pediatrics, University of Central Florida, Orlando, FL, USA

    Narendra Dereddy

  13. Division of Neonatology at Advent Health for Children, Orlando, FL, USA

    Narendra Dereddy

  14. Department of Pediatrics, University of Washington, Seattle, WA, USA

    Robert DiGeronimo

  15. Division of Neonatology, Seattle Children’s Hospital, Seattle, WA, USA

    Robert DiGeronimo

  16. Department of Pediatrics, University of Utah, Salt Lake City, UT, USA

    Con Yee Ling

  17. Division of Neonatology at Primary Children’s Hospital, Salt Lake City, UT, USA

    Con Yee Ling

  18. Department of Pediatrics, Central Michigan University, Detroit, MI, USA

    Girija Natarajan

  19. Division of Neonatology, Children’s Hospital of Michigan, Detroit, MI, USA

    Girija Natarajan

  20. Department of Pediatrics UT Southwestern Medical Center, Dallas, TX, USA

    Sujir Pritha Nayak

  21. Division of Neonatology at Children’s Medical Center, Dallas, TX, USA

    Sujir Pritha Nayak

  22. Department of Pediatrics, The Ohio State College of Medicine, Columbus, OH, USA

    Amy Brown Schlegel

  23. Division of Neonatology, Nationwide Children’s Hospital, Columbus, OH, USA

    Amy Brown Schlegel

  24. Intermountain Healthcare and Primary Children’s Hospital, Salt Lake City, UT, USA

    Jamie Seale

  25. Department of Pediatrics at University of California, Irvine, CA, USA

    Anita Shah

  26. Division of Neonatology, Children’s Hospital of Orange County, Orange, CA, USA

    Anita Shah

  27. Department of Pediatrics at University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA

    Julie Weiner

  28. Division of Neonatology Children’s Mercy – Kansas City, Kansas City, MO, USA

    Julie Weiner

  29. Department of Pediatrics at the Emory University School of Medicine, Atlanta, GA, USA

    Helen O. Williams

  30. Division of Neonatology at Children’s Healthcare of Atlanta, Atlanta, GA, USA

    Helen O. Williams

  31. Divisions of Newborn Medicine and Genetics and Genomics, Department of Pediatrics, Harvard Medical School, Boston, MA, USA

    Monica H. Wojcik

  32. Boston Children’s Hospital, Boston, MA, USA

    Monica H. Wojcik

  33. Department of Pediatrics, Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA, USA

    Kevin Sullivan

  34. Division of Neonatology, Nemours/AI DuPont Hospital for Children, Wilmington, DE, USA

    Kevin Sullivan

  35. Children’s Healthcare of Atlanta, Atlanta, GA, USA

    Anthony Piazza

  36. Children’s Healthcare of Atlanta at Scottish Rite, Atlanta, USA

    Gregory Sysyn

  37. Children’s Hospital of Alabama, Birmingham, AL, USA

    Carl Coghill

  38. Le Bonheur Children’s Hospital, Memphis, TN, USA

    Ajay Talati

  39. Children’s Hospital Boston, Boston, MA, USA

    Anne Hansen & Tanzeema Houssain

  40. Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Karna Murthy & Gustave Falciglia

  41. Cincinnati Children’s Hospital, Cincinnati, OH, USA

    Beth Haberman

  42. Nationwide Children’s Hospital, Columbus, OH, USA

    Kristina Reber

  43. Children’s Medical Center, Dallas, TX, USA

    Rashmin Savani

  44. Children’s Hospital Colorado, Aurora, CO, USA

    Theresa Grover

  45. Children’s Hospital of Michigan, Detroit, MI, USA

    Girija Natarajan

  46. Cook Children’s Health Care System, Fort Worth, TX, USA

    Annie Chi & Yvette Johnson

  47. Texas Children’s Hospital, Houston, TX, USA

    Gautham Suresh

  48. Riley Children’s Hospital, Indianapolis, IN, USA

    William Engle

  49. Children’s Mercy Hospitals & Clinics, Kansas City, MO, USA

    Eugenia Pallotto

  50. Arkansas Children’s Hospital, Little Rock, AR, USA

    Robert Lyle & Becky Rogers

  51. Children’s Hospital Los Angeles, Los Angeles, CA, USA

    Rachel Chapman

  52. American Family Children’s Hospital, Madison, WI, USA

    Jamie Limjoco

  53. Children’s Hospital & Research Center Oakland, Oakland, CA, USA

    Priscilla Joe

  54. The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Jacquelyn Evans, Michael Padula & David Munson

  55. St. Christopher’s Hospital for Children, Philadelphia, PA, USA

    Suzanne Touch

  56. Children’s Hospital of Pittsburgh of UPMC, Pittsburgh, PA, USA

    Beverly Brozanski

  57. St. Louis Children’s Hospital, St Louis, MO, USA

    Rakesh Rao & Amit Mathur

  58. All Children’s Hospital, St, Petersburg, FL, USA

    Victor McKay

  59. Rady Children’s Hospital, San Diego, CA, USA

    Mark Speziale & Laurel Moyer

  60. Children’s National Medical Center, Washington, DC, USA

    Billie Short

  61. AI DuPont Hospital for Children, Wilmington, DE, USA

    Kevin Sullivan

  62. Primary Children’s Medical Center, Salt Lake City, UT, USA

    Con Yee Ling

  63. Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Michael Uhing

  64. Children’s Hospital of Omaha, Omaha, NE, USA

    Lynne Willett & Nicole Birge

  65. Florida Hospital for Children, Orlando, FL, USA

    Rajan Wadhawan

  66. Seattle Children’s Hospital, Seattle, WA, USA

    Elizabeth Jacobsen-Misbe & Robert DiGeronimo

  67. Hospital for Sick Children, Toronto, ON, USA

    Kyong-Soon Lee

  68. Children’s Hospital Orange County, Los Angeles, CA, USA

    Michel Mikhael

Authors
  1. Krishna Acharya
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  2. Steven R. Leuthner
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  7. Ankur Datta
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  13. Girija Natarajan
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  15. Amy Brown Schlegel
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  16. Jamie Seale
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  17. Anita Shah
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  18. Julie Weiner
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  19. Helen O. Williams
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Consortia

on behalf of the 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

Corresponding author

Correspondence to Krishna Acharya.

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Acharya, K., Leuthner, S.R., Zaniletti, I. et al. 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 41, 1745–1754 (2021). https://doi.org/10.1038/s41372-021-01111-9

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