Written by David J. Hackam, MD, PhD, Chief of Pediatric Surgery and Surgeon-in- Chief Johns Hopkins Children’s Center

“They don’t just suffer, they suffer alone.”

Necrotizing enterocolitis is not just a major disease that affects premature infants. Rather, it is the very definition of a phantom menace. Creeping up silently and without warning, NEC strikes fiercely and without restraint, and is feared by neonatal caregivers of all stripes. From the point of view of the family, however, NEC is like a phantom menace on steroids. You see, unlike other conditions that affect premature infants, such as heart disease, lung disease, or kidney disease, NEC appears out of nowhere, representing a mysterious threat to their previously healthy infant’s life – a threat they have often never heard of before. It is a sad and frightening truth that in many cases, the very first time that families will have heard of NEC – this awful menace putting their child’s health in mortal danger – is when their precious baby has begun to fight it.

It is as if the first time you had ever heard about a heart attack was when you were experiencing crushing chest pain. How can this be, that our families experience this devastating disease from such a knowledge vacuum, and how as a profession can we remove this barrier to effective care? Until we answer this question, our families will suffer not just the incredible stress of having an infant with NEC, but will suffer from the guilt in believing (wrongly) that they could have somehow prevented it. And in these deep negative thoughts, they will not just suffer, but they will suffer alone. The NEC Society is working tirelessly to change this reality.

The reasons for which so many families are unaware of NEC until they experience it first-hand may have something to do with the fact that NEC is a relatively new diagnosis – having been described in the late 1970s. In a sense, the onset of NEC reflects a paradoxical success of our modern neonatal intensive care units, which have allowed infants to survive at ever younger gestational ages, providing an increasing number of children who are at risk. The diagnosis of NEC is rarely part of the prenatal conversation between the expectant parents and the obstetrical team. Moreover, given that the average lag time between premature birth and disease onset is increasing, the premature infant in the NICU is usually doing quite well and advancing feeds when the disease strikes, such that talk of NEC is relegated to some abstract concept, far less pressing to families than other more active aspects of the daily NICU routine.

So, how can we reduce the burden on families with NEC? The first approach has to involve a greater emphasis on providing families with more information so that families are as familiar with the disease as they are with all other aspects of the care of their premature infant. The NEC Society demonstrates the transformative power of families and how families should be front and center in all aspects of NEC research and care.

Second, there must be a greater emphasis on the NEC Biorepository and research funding devoted to fundamental studies on NEC. Such studies – including those that seek to maximize our understanding of the premature immune response to the bacteria that colonize the developing gastrointestinal system – are likely to have tremendous benefit to other diseases of prematurity and thus have a broad appeal to scientists in the fields not just of pediatrics and pediatric surgery, but also infectious diseases, immunology, and neurology.

Finally, we must recognize that while NEC is a menace, it is a menace that is up against an army of defenders – in the form of physicians, surgeons, scientists, families, caregivers, and everyone who cares about NICU babies. As this battle is fought, it is all of our sincere hope that no family should ever have to suffer from a diagnosis of NEC and that we build a world without this devastating disease. Until we get there, we will work tirelessly to ensure families never suffer this disease alone.

The NEC Society is grateful for Dr. David Hackam’s leadership and commitment to the field. Dr. Hackam keynoted the 2017 NEC Symposium at UC Davis, and served as faculty for the 2019 NEC Symposium at the University of Michigan and 2023 NEC Symposium in San Diego.