Trigger Warning: Child Loss
When my son, Leo, was just six weeks old, I believed he had conquered the typical challenges faced by premature infants born at 27 weeks. He had nearly doubled his birth weight, begun nursing, and it seemed we were on the verge of bringing him home within weeks.
Sadly, like a hidden threat, Leo developed necrotizing enterocolitis (NEC). This serious condition led to multiple complications, including several bowel surgeries and, most devastatingly, kidney failure. Leo became so fluid-overloaded that he struggled to even open his eyes.
With the help of a remarkable medical team, Leo was able to come home after months in the NICU and PICU. Having him back felt like a dream realized; it seemed we could finally start living a more typical life.
Tragically, just before his first birthday, Leo passed away due to complications from NEC. Six years have gone by since that heartbreaking goodbye, and every single day has been a quest to keep Leo’s memory alive. Throughout this journey, I’ve gained insights and perspectives that I wish I had before his NEC diagnosis.
Most families affected by NEC share a common experience: they had never heard of this illness and were unaware of their baby’s risk until the diagnosis was made. The guilt I felt for not knowing—thus being unable to advocate for Leo—was crushing. As parents, we instinctively want to safeguard our children’s health, yet the tools for early detection and prevention strategies for NEC are severely lacking. Consequently, NEC often strikes suddenly, catching both families and medical professionals off guard.
Today, awareness, resources, and research surrounding NEC are insufficient, largely due to decades of neglect in prevention strategies. The NEC Society, along with global partners like the UK’s Special Interest Group NEC and Brazil’s Pequenos Grandes Guerreiros, is striving to change this narrative to eliminate NEC altogether.
May 17 marks World NEC Awareness Day, where leading NEC charities unite to foster awareness and promote research. However, there are nine crucial points everyone should know about this devastating, complex disease:
- NEC is the leading cause of death in hospitalized premature infants after two weeks of age. Babies who are born prematurely or have complications like congenital heart disease are particularly vulnerable. Thousands of infants develop NEC annually in the U.S., with hundreds succumbing to this serious intestinal condition.
- This condition triggers a severe inflammatory response that can result in intestinal tissue damage and even death. Once NEC is diagnosed, many infants only survive for hours or days. Surgery is not a cure; surviving babies often face lifelong neurological and nutritional challenges.
- Mother’s milk is one of the most effective preventive measures for medically fragile infants at risk of NEC. When a mother’s own milk is unavailable, pasteurized donor milk is the next safest alternative.
- Formula feeding can increase the risk of NEC in vulnerable infants. For babies at risk, mother’s milk or pasteurized donor milk offers protection, while formula can heighten the chances of developing this condition.
- Although we cannot yet eliminate the risks of NEC, effective prevention measures exist. Research indicates promising strategies to reduce risks, including the use of mother’s milk (or donor milk), standardized feeding protocols, probiotics, limited antibiotic use, and NICUs engaging in quality improvement initiatives.
- Parents should be recognized and valued as partners in their child’s healthcare journey. Parents often possess invaluable insights about their babies. For resources on how healthcare professionals can better collaborate with NICU parents, check out the NEC Society’s offerings.
- Full-term infants can also develop NEC. This condition is not exclusive to premature babies, and we lack sufficient data to understand its occurrence in term infants.
- There are disparities in the care provided to infants at risk of NEC. Without universal care standards or guidelines, the quality of care can vary significantly from one facility to another, and even between individual clinicians. We are working to address this issue.
- We are making more progress than ever before. In the past five years, more resources have been dedicated to combating NEC than in the previous fifty years combined.
We invite families to share their experiences with NEC through photos and stories, and we encourage NEC professionals to spotlight their dedicated teams and research efforts aimed at preventing this condition. Join us on social media with the hashtags #preventNEC, #NECday, and #ThisIsNEC. Learn more about how we are working toward a world free from NEC by visiting our other blog post at intracervicalinsemination.com/privacy-policy.
In summary, the journey with NEC is one fraught with challenges and heartache, but through awareness and education, we can work towards a better future for all infants. For additional information, the CDC provides excellent resources on pregnancy and home insemination that can be found here. Additionally, for those interested in fertility supplements, Make a Mom offers valuable guidance.