I Didn't Know NEC Existed Until It Took My Baby's Life

Trigger warning: child loss

When my son Micah was six weeks old, I thought he had overcome his fiercest battles that are common to babies born at 27 weeks gestation. He had doubled his birth weight, was beginning to nurse, and looked like he would be discharged home in just a couple of weeks.

Tragically, like a phantom menace on steroids, Micah developed necrotizing enterocolitis (NEC). His infection led to a host of complications including multiple bowel resections, and most significantly, renal failure. Micah became severely fluid overloaded, to the point where he couldn’t even open his eyes.

Thanks to an incredible team of providers, Micah survived and came home. After spending months in the NICU and PICU, having Micah at home was a dream come true. Micah had made it, and we could finally begin to have a more “normal” life.

Tragically, Micah died just before his first birthday from complications of NEC. It’s been six years since I kissed Micah goodbye. I have spent every one of those days since then trying to figure out how to keep Micah in my life. Through this journey, I have gained perspective and insight that I desperately wish I had known before Micah’s NEC diagnosis.

Nearly all families impacted by NEC have one thing in common: they had never heard of the disease – and they did not know their baby was at risk – until their infant was actually being diagnosed. The shame and guilt I experienced from not knowing – and thus not being able to advocate for Micah – was overwhelming. As parents, we are compelled to protect the health of our babies, but tools for early detection and strategies for NEC prevention are under-developed or non-existent. Accordingly, NEC often appears out of nowhere, blindsiding both clinicians and families.

Today, NEC awareness, resources, and research are inadequate because prevention was neglected for decades and the disease too often regarded as inevitable. The NEC Society and our global partners, Special Interest Group NEC in the UK and Pequenos Grandes Guerreiros in Brazil, are working to change this so we can build a world without NEC.

May 17 is World NEC Awareness Day. The world’s leading NEC charities are coming together to raise awareness and drive research. But every day of the year, there are 9 things we want the world to know about this devastating, multifactorial disease:

1. NEC is the most common cause of death in hospitalized premature infants after two weeks of age.

Babies born prematurely or with a complication, like congenital heart disease, are most at risk of NEC. In the US, thousands of babies develop NEC each year and hundreds of babies die from this complex intestinal condition.

2. NEC causes a severe inflammatory process that can lead to intestinal tissue damage and death.

Once NEC is diagnosed, many babies only live for a few hours or days. Surgery for NEC is not curative and the babies who survive often have lifelong neurological and nutritional complications.

3. Mother’s’ milk is one of the best ways to help prevent NEC in medically fragile babies.

When mother’s own milk is unavailable, pasteurized donor milk is the next safest option for babies at risk of NEC.

4. Formula increases the risk of NEC in medically fragile babies.

For babies at risk of NEC, mother’s own milk and pasteurized donor milk are protective against NEC, while formula feeding increases the risk.

5. While we cannot eliminate the risks of NEC (yet), prevention measures are effective.

While there are not ways to stop or cure NEC, research has shown promising ways to reduce the risks, including mother’s milk (or donor milk), standardized feeding protocols, probiotics, limiting antibiotics, and having NICUs participate in quality improvement projects.

6. Parents must be trusted and valued as partners in their baby’s care.

Parents know their babies best. Check out the NEC Society’s resources on how healthcare providers can partner with NICU parents.

7. Term infants can develop NEC.

NEC is not only a disease of prematurity. We have very little data to help us understand how and why NEC occurs in term-babies.

8. There are disparities and variation in care for babies at risk of NEC.

Without universal standards of care or guidelines, the type of care a baby receives varies from center to center, and even from clinician to clinician. We’re working to change this.

9. We’re making more progress than ever before.

We have seen more resources dedicated to building a world without NEC in the last five years than we have in the last five decades.

We are encouraging families to show us how NEC has impacted their lives in photos and stories. We are asking NEC clinicians and scientists to highlight their care teams and labs that work tirelessly to prevent NEC. Join us on social media and use the hashtags #preventNEC #NECday #ThisIsNEC

Learn more about how we’re building a world without NEC by visiting NECsociety.org.