Necrotizing Enterocolitis – The Horrifying Intestinal Disease Too Many Babies Are Still Dying From

Micah Necrotizing Enterocolitis

Micah, before he developed necrotizing enterocolitis. Credit: Jennifer Canvasser, NEC Society

New research has found that in the US between 1999 and 2020, Black infants disproportionately died from necrotizing enterocolitis compared to White infants, despite overall improvements in the rates of death from the disease. This is according to a study published today (March 3, 2023) in JAMA Network Open 

Necrotizing enterocolitis (NEC) is one of the most common causes of death in preterm infants. Medically-fragile term infants, such as neonates born with a congenital heart defect, are also at an elevated risk of NEC. Two prior studies reported conflicting trends in NEC rates. One study from 2000-2011 showed increasing rates of death from the condition over time. Another study reported declining rates of NEC from 2006-2017.

Necrotizing enterocolitis (NEC) is a serious medical condition that primarily affects premature babies. It occurs when the tissue lining of the intestine becomes inflamed and starts to die off. This can cause damage to the intestinal wall and can lead to perforations, which can allow bacteria and other harmful substances to leak into the baby’s bloodstream. NEC can cause a range of symptoms, including feeding problems, bloating, and blood in the stool. It can be life-threatening and requires immediate medical attention.

Researchers in the current study wanted to determine the trends in NEC-related deaths in the US spanning both of these periods. They also examined racial disparities and geographic differences.

The study used data on US infant deaths from 1999 through 2020 from the Centers for Disease Control and Prevention and the National Center for Health Statistics. The researchers analyzed all infant deaths up to 1 year of age, with the underlying cause being NEC.

Of 88,125,233 live births, 8,951 infants died of NEC. Rates of NEC-related deaths per 100,000 live births were higher among Black infants (16.1) compared to White infants (6.4). The study found that in 2007, there was an inflection with a change in US trends in NEC-related deaths; NEC-related deaths decreased by 7.7% per year from 2007 through 2012. However, there were no additional declines after 2012. Racial differences in NEC-related deaths decreased over time, although in 2020, Black infants were still 2.5 times more likely to die from NEC than White infants.

Dr. Mattie Wolf, first-author of this study and a post-doctoral fellow at Emory University and Children’s Healthcare of Atlanta, notes, “These data clearly show improvements in NEC-related death in the US, although we do not know exactly what factors are driving these improvements.”

“Our results show we have made progress in reducing deaths related to NEC, but given the lack of improvements since 2012, we still have continued work to do to reduce the burden of this disease,” says Ravi Patel, MD, MSc, Associate Professor of Pediatrics at Emory University School of Medicine and Children’s Healthcare of Atlanta and senior author of this article.

Jennifer Canvasser, MSW, Founder and Executive Director of the NEC Society and co-author of the study, shares, “These data reveal that someone’s child died from NEC each day, on average, over this period. My son Micah is one of the 8,951 babies. Clinicians, scientists, and patient-families intimately understand the devastation of NEC. Together, with policy-makers and stakeholders who care, we are working tirelessly to improve outcomes and provide equitable care so that all babies can thrive and avoid the devastation of this disease.”

Reference: “Trends and Racial and Geographic Differences in Infant Mortality in the United States Due to Necrotizing Enterocolitis, 1999 to 2020” by Mattie F. Wolf, MD; Allison T. Rose, MD; Ruchika Goel, MD, MPH; Jennifer Canvasser, MSW; Barbara J. Stoll, MD and Ravi M. Patel, MD, MSc, March 2023, JAMA Network Open.
DOI: 10.1001/jamanetworkopen.2023.1511

Additional authors of this study include Allison Rose, MD, Ruchika Goel, MD, MPH, and Barbara J. Stoll, MD. The study was supported by the National Institutes of Health.

The NEC Society is a 501(c)(3) nonprofit organization dedicated to building a world without necrotizing enterocolitis (NEC) through research, advocacy, and education. The NEC Society is a patient-led organization that collaborates with expert clinicians and researchers to better understand, prevent, and treat this devastating neonatal intestinal disease.

1 Comment on "Necrotizing Enterocolitis – The Horrifying Intestinal Disease Too Many Babies Are Still Dying From"

  1. If race matters, then why only talk about black and white infants? Weren’t the infants of other races important enough to study?

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