Trigger warning: child loss
When my son Lucas reached six weeks old, I believed he had triumphed over the typical challenges faced by infants born at just 27 weeks gestation. He had successfully doubled his birth weight, was starting to nurse, and I was hopeful he would be coming home in a matter of weeks.
Unfortunately, a devastating twist occurred: Lucas developed necrotizing enterocolitis (NEC). This infection triggered a series of complications, including multiple bowel resections and, most tragically, renal failure. Lucas became so severely fluid overloaded that he was unable to open his eyes.
Thanks to a remarkable team of healthcare professionals, Lucas survived and finally came home. After enduring months in the NICU and PICU, having him with me felt like a dream realized. Lucas had overcome so much, and we could finally begin to enjoy a semblance of a “normal” life.
Tragically, just before his first birthday, Lucas passed away due to complications from NEC. It has been six long years since I had to say goodbye to him, and I have spent every day since trying to find ways to keep his memory alive. Throughout this journey, I have gained insights that I wish I had before Lucas received his NEC diagnosis.
Most families affected by NEC share a common thread: they were unaware of the condition and did not know their baby was at risk until the diagnosis was made. The guilt and shame I felt for not knowing and thus failing to advocate for Lucas was overwhelming. As parents, we instinctively want to protect our children’s health, yet the tools for early detection and strategies for NEC prevention are severely lacking. As a result, NEC often comes as a shock to both families and clinicians.
Today, awareness, resources, and research on NEC remain inadequate due to decades of neglect in prevention efforts, with the disease often viewed as inevitable. Organizations like the NEC Society, along with global partners such as the Special Interest Group NEC in the UK and Pequenos Grandes Guerreiros in Brazil, are dedicated to changing this narrative to create a world free from NEC.
May 17 marks World NEC Awareness Day, a time when leading NEC charities unite to promote awareness and push for research. However, there are critical facts about this devastating and multifaceted disease that everyone should know:
- NEC is the leading cause of death among hospitalized premature infants after two weeks of age. Premature babies or those with complications, like congenital heart disease, are particularly vulnerable. In the U.S., thousands of infants develop NEC each year, with hundreds succumbing to this complex intestinal condition.
- NEC triggers a severe inflammatory response that can cause intestinal tissue damage and necrosis. Once diagnosed, many infants only survive for a few hours or days, and surgery does not guarantee a cure—those who survive frequently face lifelong neurological and nutritional challenges.
- Mother’s milk is one of the best defenses against NEC in medically fragile infants. If a mother’s milk is unavailable, pasteurized donor milk is the second safest alternative for at-risk babies.
- Formula feeding increases the risk of NEC in vulnerable infants. For babies at risk, mother’s milk and pasteurized donor milk provide protective benefits against NEC, whereas formula feeding heightens the risk.
- While we cannot yet eliminate the risks associated with NEC, preventive measures have proven effective. Research indicates promising strategies to minimize risks, including the use of mother’s milk (or donor milk), standardized feeding protocols, probiotics, reduced antibiotic use, and participation in quality improvement initiatives by NICUs.
- Parents must be recognized as essential partners in their baby’s care. They know their infants better than anyone else. Resources from the NEC Society offer guidance on how healthcare providers can collaborate effectively with NICU parents.
- Term infants can also develop NEC. This condition is not exclusive to premature babies, and we still lack comprehensive data to understand why NEC occurs in full-term infants.
- There are disparities in care for infants at risk for NEC. Without universal care standards or guidelines, the quality of care can vary widely between facilities and individual clinicians. Efforts are underway to address this inconsistency.
- Significant progress is being made. In the past five years, we have seen more resources dedicated to eradicating NEC than in the previous fifty years combined.
We encourage families to share how NEC has affected their lives through photos and stories. We also invite NEC clinicians and researchers to showcase their dedicated teams and laboratories working tirelessly to combat this condition. Join us on social media and use the hashtags #preventNEC, #NECday, and #ThisIsNEC.
For more information on building a world without NEC, visit NECsociety.org.
In summary, the awareness and understanding of NEC is crucial to preventing its devastating effects on vulnerable infants. The collective efforts of families, healthcare providers, and advocacy organizations are essential in creating a future where NEC is no longer a threat to our children.