When my son Noah was just six weeks old, I believed he had triumphed over the common challenges faced by babies born prematurely at 27 weeks. He had gained weight, was starting to nurse, and it seemed like he would soon be coming home.
However, out of nowhere, Noah was diagnosed with necrotizing enterocolitis (NEC). This devastating condition led to severe complications, including multiple bowel surgeries and, most tragically, kidney failure. Noah became so overloaded with fluids that he struggled to open his eyes.
Miraculously, thanks to a dedicated medical team, Noah survived and came home after spending months in the NICU and PICU. It was a dream realized; we could finally start our lives as a family. But heartbreakingly, Noah passed away just before his first birthday due to NEC complications. It has been six years since I last held him, and every day since, I have sought ways to keep his memory alive. Along this journey, I have gained insights that I desperately wish I had known before his diagnosis.
Most families affected by NEC share a common experience: they were unaware of this disease and its risks until their babies were diagnosed. The guilt and shame I felt from not knowing enough to advocate for Noah were overwhelming. As parents, we strive to protect our children’s health, yet tools for early detection and NEC prevention remain woefully inadequate. NEC often strikes unexpectedly, catching both families and healthcare providers off guard.
Currently, awareness, resources, and research surrounding NEC are lacking due to decades of neglect in prevention strategies. The NEC Society, along with our global partners, is striving to change this narrative with the goal of creating a world free from NEC.
May 17 is recognized as World NEC Awareness Day, when prominent NEC charities unite to promote awareness and drive research efforts. Beyond that, here are nine crucial points about this complex disease that we want the world to understand:
- NEC is the leading cause of death in hospitalized premature infants after two weeks of age. Premature infants or those with complications, such as congenital heart defects, face the highest risk of developing NEC. In the United States, thousands of babies are affected annually, with hundreds succumbing to this intestinal condition.
- The inflammatory process caused by NEC can result in serious intestinal tissue damage and death. Once diagnosed, many infants have only hours or days to live. Surgery does not cure NEC, and those who survive often face lifelong neurological and nutritional challenges.
- Mother’s milk is one of the most effective preventive measures against NEC in vulnerable infants. When a mother’s own milk isn’t available, pasteurized donor milk is the next best option.
- Formula feeding raises the risk of NEC in medically fragile babies. In contrast, mother’s milk and donor milk provide protective benefits.
- While we can’t completely eliminate the risks of NEC yet, we do have effective prevention strategies. Research suggests ways to minimize risks, including the use of mother’s milk, standardized feeding protocols, probiotics, and limiting antibiotic use.
- Parents must be seen as essential partners in their child’s care. They know their babies best. The NEC Society offers resources on how healthcare providers can collaborate with NICU parents.
- It’s important to note that term infants can also develop NEC. There is limited data on how and why NEC occurs in full-term babies.
- There are disparities in care for infants at risk for NEC. Without universal care standards, treatment can vary widely across different facilities and clinicians. Efforts are underway to standardize this care.
- We are making significant progress! In the past five years, more resources have been allocated toward combating NEC than in the previous fifty.
We encourage families to share how NEC has affected their lives through photos and stories, and we invite NEC clinicians and researchers to showcase their teams and labs dedicated to prevention. Join us on social media with the hashtags #preventNEC, #NECday, and #ThisIsNEC. For more information on building a world without NEC, visit NECsociety.org.
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In summary, NEC is a critical health concern that affects many families, and raising awareness is essential for prevention and advocacy. Through collaboration and education, we can work towards eradicating this devastating disease.
Keyphrase: necrotizing enterocolitis awareness
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