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Characteristics and outcomes of a multi-institution cohort of infants with necrotizing enterocolitis totalis

ABSTRACT

Objective

To characterize the presentation, management and outcomes of infants with necrotizing enterocolitis totalis (tNEC) vs surgical non-totalis NEC (sNEC).

Study design

This retrospective study identified infants undergoing surgery for NEC through The Children’s Hospitals Neonatal Database. Demographic, surgical and mortality characteristics were compared.

Results

Of 1059 infants, 161 (15.2%) had tNEC. Perinatal characteristics did not differ. tNEC infants were older and were less likely to have pneumoperitoneum at referral (5.6% vs 13.1%, p < 0.001) or intestinal perforation at surgery (38.5% vs 66.7%, p < 0.001). Infants with tNEC were more acidotic preoperatively (7.1, [IQR 7, 7.3] vs 7.3, [IQR 7.2, 7.4], p < 0.001). Mortality was 96.9% for tNEC and 26.5% for sNEC (p < 0.001). tNEC cases varied by center, accounting for 0–43% of all surgical NEC cases.

Conclusions

Mortality is high for tNEC infants, who present at older age, with greater illness severity but are less likely to have intestinal perforation than sNEC infants.

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Fig. 1: Diagram of study population.
Fig. 2: Kaplan-Meier Survival curves by necrotizing enterocolitis typic.
Fig. 3: Percent overall mortality by center and percent totalis by center for centers contributing at least five patients to the study cohort.

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Acknowledgements

We are most grateful to Ira Adams-Chapman, MD. She contributed extensively with her fund of knowledge and professional mentorship throughout this project including concept, design, and editing until her premature death on October 27, 2020. We thank Karna Murthy, MD (Ann & Robert H. Lurie Children’s Hospital of Chicago) for his ongoing critical review of this project and Ravi M. Patel, MD, MSc (Emory University School of Medicine) for his critical review of this manuscript. We thank Shira M. Asherman (Emory University School of Medicine) for her editing. We are indebted to the clinicians and institutions that serve the infants and families of the Children’s Hospital’s Neonatal Consortium.

Funding

Supported by Department of Pediatrics at Emory University Fellowship Grant (<20205 > [to Allison T. Rose, MD]).

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Authors and Affiliations

Authors

Contributions

ATR and AJP conceptualized and designed the study, interpreted the results, drafted the initial manuscript, reviewed and revised the manuscript, and participated in funding acquisition. IZ participated in study design, data analysis, and reviewed and revised the manuscript. MTS conceptualized and designed the study, reviewed and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Corresponding author

Correspondence to Allison T. Rose.

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Competing interests

All listed authors declare no real or perceived conflicts of interest with the exception of Isabella Zaniletti, who is an employee of the Children’s Hospital Association, Inc (Overland Park, KS) which designed, launched and maintained the database used in this study from 2012–2016.

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Rose, A.T., Zaniletti, I., Santore, M.T. et al. Characteristics and outcomes of a multi-institution cohort of infants with necrotizing enterocolitis totalis. J Perinatol 42, 440–445 (2022). https://doi.org/10.1038/s41372-021-01191-7

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