5 Parent Resources for Children With Necrotizing Enterocolitis (NEC)

Necrotizing enterocolitis (NEC) is a serious illness affecting newborns. The result of inflamed tissue in the large intestine, NEC damages and kills tissue in a baby’s colon. NEC can also cause a hole in the intestines that allows bacteria to spread from the intestinal tract to the abdomen and, in some cases, throughout the body. 

Physicians aren’t exactly sure what causes NEC, but it is strongly associated with premature births and formula feeding. Feeding premature babies human milk can reduce the risk of NEC. Conversely, preemies fed cow’s milk-based formulas, such as Enfamil and Similac, are at higher risk of developing NEC, studies have shown. The parents of babies diagnosed with NEC are alleging in lawsuits that formula makers like Abbott Laboratories and Mead Johnson and Company knew of the links between NEC and formulas derived from bovine milk, but failed to warn about this serious side effect. 

We’ve put together some resources to help parents understand the disease and get medical help. 

NEC Society

The NEC Society is a nonprofit research, advocacy, and educational organization whose mission is to build a world without NEC. Its website has resources for families, including information to help parents make informed decisions for their baby, navigate the neonatal intensive care unit (NICU), and find support. There are also opportunities to get involved with and support the NEC Society. 

National Institutes of Health 

The NIH, part of the U.S. Department of Health and Human Services, is the largest medical research agency in the world. NIH links to a number of websites and groups that provide information about NEC. This is a good starting point for parents wanting to know more details about the disease and how to care for a premature infant. There are also links to resources that give a more scientific perspective on NEC and preterm babies. 

Cleveland Clinic

One of the nation’s top hospitals, Cleveland Clinic has a comprehensive summary of NEC-related issues, including symptoms and causes, tests used to diagnose the disease, possible complications and how to manage them, treatment options, prevention, and questions to ask your healthcare provider. A references section has links for further reading on these topics. 

UNICEF

Curious about the research linking breastmilk to lower rates of NEC? This is your one-stop link for studies that explore the connection. The earliest study on the subject, which dates back to 1990, found that formula-fed preterm infants were 6 to 10 times more likely to develop NEC than those receiving breastmilk. The most recent link is to a 2020 study that found intake of mother’s milk is associated with lower rates of NEC and other conditions. 

BMJ

The BMJ, a highly-respected peer-reviewed medical journal, published a 2021 review that looks at what it describes as an attempt to normalize infant formula feeding. BMJ attributes this normalization, in part, to “aggressive marketing of formula products.” However, it concludes that scientific trials supporting these marketing claims—which are almost always reported as favorable—lack independence and transparency. The formula industry plays a large role in formula trials and has a financial incentive to promote formula over breastfeeding—a point that is raised in infant formula NEC lawsuits. 

Morgan & Morgan, the nation’s largest injury law firm, has put together its own resources on baby formula and NEC. You can find them here and here. And you can click here to schedule a free consultation with a defective product lawyer, who will be your best resource for learning your legal options.