I Had No Idea NEC Existed Until It Took My Child’s Life

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Trigger Warning: Child Loss

When my daughter, Lily, was just six weeks old, I believed she had triumphed over the significant challenges faced by infants born at 27 weeks. She had successfully doubled her birth weight, started nursing, and seemed poised for discharge from the hospital in a matter of weeks.

However, in a cruel twist of fate, Lily developed necrotizing enterocolitis (NEC), a condition that wreaked havoc on her fragile system. This infection triggered a cascade of complications, including multiple bowel surgeries and, most critically, kidney failure. Lily became so fluid-overloaded that she struggled to keep her eyes open.

Thanks to a dedicated medical team, Lily eventually recovered and came home. After months in the NICU and PICU, having her at home felt like a glorious dream. We believed we could finally settle into a “normal” routine.

Tragically, just shy of her first birthday, Lily succumbed to complications from NEC. It has been six years since I said my final goodbye to her, and each day since I have sought ways to keep her memory alive. Through this journey, I’ve gained insights that I wish I had known before her diagnosis.

Nearly every family affected by NEC shares a common experience: they were unaware of the disease and its risks until their baby was already diagnosed. The guilt and shame I felt for not knowing – and therefore not being able to advocate effectively for Lily – was overwhelming. As parents, we have an instinct to protect our children’s health, but the lack of early detection tools and preventive strategies for NEC is alarming. Often, NEC appears suddenly, catching both healthcare professionals and families off guard.

Currently, awareness, research, and resources surrounding NEC are woefully inadequate due to decades of neglect, with the condition often considered unavoidable. Organizations like the NEC Society, along with our collaborators, such as the Special Interest Group on NEC in the UK and Pequenos Grandes Guerreiros in Brazil, are striving to change this narrative and work towards a future without NEC.

May 17 marks World NEC Awareness Day, when leading NEC charities unite to promote awareness and advocate for research. However, every day, there are vital facts about this devastating disease that deserve attention:

1. NEC is the primary cause of death in hospitalized preterm infants after two weeks of age. Infants born prematurely or with health complications, such as congenital heart disease, are particularly vulnerable. Thousands of babies in the U.S. develop NEC annually, leading to hundreds of fatalities.
2. This condition triggers a severe inflammatory response that can result in intestinal tissue damage and even death. Once diagnosed, many infants only survive for a few hours or days; surgery is not a cure, and survivors may face long-term neurological and nutritional issues.
3. Maternal milk is one of the most effective ways to help prevent NEC in vulnerable babies. When a mother’s own milk isn’t available, pasteurized donor milk becomes the next safest alternative.
4. Formula feeding increases the risk of NEC in at-risk infants. In contrast, mother’s milk and pasteurized donor milk offer protective benefits against the condition.
5. Although we cannot yet eliminate the risk of NEC, effective preventive measures are available. Research indicates that using mother’s milk (or donor milk), adhering to standardized feeding protocols, and utilizing probiotics can significantly mitigate risks.
6. Parents should be viewed as essential partners in their baby’s care. They possess invaluable knowledge about their child. The NEC Society offers resources on how healthcare providers can collaborate effectively with NICU parents.
7. Full-term infants can also develop NEC. This is not solely a premature infant issue, and we lack sufficient data to understand its occurrence in term babies.
8. There is variability in the care provided to at-risk infants. Without universal standards or guidelines, the level of care can differ significantly between facilities and practitioners. We are actively working to address this issue.
9. Progress is being made. In the past five years, more resources have been allocated to combat 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 clinicians and researchers to showcase their teams and laboratories dedicated to preventing this disease. Join the conversation on social media with the hashtags #preventNEC, #NECday, and #ThisIsNEC. For more insights into creating a world without NEC, visit NECsociety.org.