In the past 8 years since beginning our SPIN program (spinprogam.ucsd.edu), our NICU now rarely sees surgical necrotizing enterocolitis (NEC). However, more than two decades ago, when I was training, this condition was a dreaded menace and something to fear. It took tiny lives like a thief in the night and damaged the bowel with profound and unchecked inflammation. I saw many infants die from NEC totalis, a condition where the entire bowel became irreversibly necrotic. I saw many other infants become intestinal cripples with small fractions of bowel length compared to what they were born with. Each time I struggled to put the pieces together, why this happened and why this almost always afflicted our most vulnerable infants. NEC is a disease of great magnitude. We have struggled to make a dent in its frequency and severity over the past two decades. Disappointedly there has been only a small decrease in the past decade in the overall incidence of NEC nationally (Vermont Oxford Network). Perhaps some of this slow decline is due to resuscitating more immature infants than ever before, and who are those that carry the highest risk for NEC. Despite these data, however, I am optimistic that the goal of reaching zero NEC is altogether possible. It will take a village to push the agenda, particularly on pushing practices that are well known to be linked to a reduction in NEC.
The fight against NEC has revealed that those who have been most successful have been able to exercise at least two measures, both in the area of prevention. The first is to corral neonatologists to follow a standardized feeding protocol for enteral feeding. The second is to eliminate infant formula from the early diet of preterm infants and replace it with mother’s milk or donor milk. For example, our SPIN program implemented a standardized feeding protocol as well as the use of donor milk to bridge mother’s milk when this was not available to ensure an early human milk diet. We have gone through 2-3 year cycles where we are completely free of surgical NEC in our 49 bed unit. However, probably only half of the country’s NICUs practice these two principles. What we know of NEC is that it occurs predominantly in premature newborns who are at risk of having the wrong bacteria and the wrong substrate to protect the intestine, setting up an altered microbiome (dysbiosis) for NEC. Controlling feeding rates and feeding type then appear to be strong influences on the kind of bacteria that settle down in the gut.
Survivors of NEC also often face two terrible long-term outcomes, short bowel syndrome (SBS) and neurodevelopmental impairment (NDI). Infants with SBS lost the majority of their bowel and are some of the sickest infants in our units. They have chronic digestive and absorptive problems and a high risk of developing severe cholestatic liver disease. The liver disease has improved significantly with standardization of practice and with the use of fish oil based lipid emulsions. Short bowel syndrome can also spiral to intestinal failure, which prompts the subsequent need for intestinal transplantation which is an enormous patient burden. The strong association of NEC with long-term NDI is irrefutable and concerning as this impacts the life of NEC survivors to engage at their fullest capacity in society.
It is far too often that medical evidence is not enough to advance our practice to generate better outcomes we all want in medicine. Can we raise community awareness with conditions like NEC? And can we do more to promote low-hanging fruits of best practices such as standardized feeding guidelines and promotion of a human milk diet to affect this dreadful condition? For some time I thought this would not be possible or take very long, but recent developments have me very hopeful.
One such ray of hope comes from the power of parents. NEC Society (necsociety.org) was founded by parents who had a strong interest in making a difference in the future of infants who are at risk or who develop NEC. Many of these parents have had some contact or history with their own child or relative having suffered or died from NEC. Members are very eager to engage all the stakeholders possible that can influence and change the practice in medicine so that future babies are given the best opportunities to avoid this horrible condition. These parents have coalesced to advocate for the future of preterm infants who are at risk of NEC and this gives me tremendous hope that change is going to happen faster and sooner. Remarkably this parent sponsored movement has successfully secured funding for the first North American conference on NEC (Necrotizing Enterocolitis Symposium) to be held on April 6 and 7, 2017 in Sacramento, California. The conference will be a novel transdisciplinary forum to address all the complex aspects of NEC and synergize stakeholders including clinicians, scientists, caregivers, parents, industry, legislators, insurance and government agencies into action. With this grassroots surge taking place, the goal of zero NEC no longer seems lofty. I vote strongly to give more power to the parents to make things happen. Stay tuned as the countdown to zero has begun!
Looking for more on this subject? Read Dr. Kim’s previous post,
Human Milk: The Original Personalized Medicine