Written by: Lisa Stellwagen MD, FAAP, HMBANA President-Elect and Tarah Colaizy MD, MPH
In August 2024, the Secretary of Health and Human Services (HHS) asked the National Advisory Council on Child Health and Human Development to form a working group on Necrotizing Enterocolitis (NEC) in premature infants. This group of experts, including neonatologists, researchers, government officials, advocates, and milk bank representatives, came together to review the science on NEC and make recommendations for improving care.
The resulting report, presented to the Secretary of HHS on September 16, 2024, strongly emphasized the importance of human milk—both mother’s own milk and donor milk—in reducing the risk of NEC. It highlighted research showing that donor milk can reduce the risk of NEC by 50% in preterm infants compared to formula. The group also stressed the need for more research on milk storage, processing, and access to donor milk, as well as efforts to encourage milk donation.
This marks a significant step in advancing research, policy, and advocacy to support non-profit milk banks, like HMBANA's member banks, in providing life-saving donor milk to vulnerable infants.
NEC Working Group Recommendations (discussed in more detail in the document):
Overarching recommendations:
- Expand research into prevention of premature birth, including ways to delay impending births beyond the window of higher NEC risk.
- Develop a standardized definition of NEC and severity of NEC to improve epidemiologic studies and determine eligibility for trials and treatments.
- Ensure that research on NEC incorporates the perspectives of affected families.
Epidemiology of NEC
- Improve tracking and reporting of NEC cases as well as deaths.
- Expand support for neonatal biorepositories to facilitate research to identify diagnostic, prognostic, predictive, susceptibility, and/or surrogate markers of NEC.
- Explore innovative methods for collecting and analyzing data.
Mechanisms of NEC
- Expand research to describe the biologic mechanisms of NEC development.
- Improve animal and laboratory models to better reflect the disease’s complexity.
Factors Affecting Risk of NEC
- Explore exposures that may be positively or negatively associated with risk of NEC development, severity, and mortality.
- Expand research on feeding practices that may affect NEC risk.
Nutritional Support for Premature Infants and NEC
- Support research to identify the optimal nutritional needs of premature infants, how these may vary by gestational age at birth, and the specific nutritional needs of NEC survivors.
- Increase research to support parent’s milk production and lactation techniques for preterm and term infants.
- Evaluate how the collection, processing, storage, and dispensing of donor and/or parental milk might impact its nutritional content and impact on intestinal health.
Feeding Practices and NEC
- Support large clinical trials of feeding practices and NEC risk, including timing of onset, severity, mortality, and long-term effects on survivors.
- Explore innovative clinical trial designs to test, via applicable IND regulations, the safety and efficacy of promising drugs and biologics to prevent and/or treat NEC.
- Expand implementation science research to reduce disparities related to NEC and in the availability of parent’s own and pasteurized donor milk.
- Support research on parent education both before delivery and in the NICU about feeding practices and risk of specific conditions, including NEC.
