Uniting to Prevent NEC
The NEC Society is the world’s leading nonprofit organization dedicated to the prevention and treatment of necrotizing enterocolitis through research, education, and advocacy. We intimately understand the devastating outcomes that result from the lack of prevention and treatment options for NEC. We appreciate the FDA, CDC, and NIH’s recognition of the complexities surrounding the use of probiotics for infants at risk for NEC, and we support the intentional focus on the safety of therapeutics for this vulnerable population.
The NEC Society was founded in 2014 by Jennifer Canvasser, after she lost her son, Micah, to complications of NEC just before his first birthday. When she and her family experienced the sudden and traumatic NEC diagnosis, there was little information available to parents on the risks, treatments, or potential causes of NEC. She has since harnessed and empowered an international network of clinicians, scientists, and patient-families working together to build a world without this cruel disease.
The current prevention and treatment options for NEC are inadequate and failing our community. Although more research is urgently needed to fully understand and eliminate NEC, current evidence demonstrates that key care practices can meaningfully influence NEC rates. More specifically, research has demonstrated that probiotics may be an effective tool to help prevent NEC and death in very low birth weight infants. The NEC Society developed and released the Neonatal Probiotics Toolkit, a resource for NICU clinicians seeking to better understand probiotics use, intending to inform a decision-making process and foster discussion amongst key stakeholders specific to each unit. The Toolkit includes a comprehensive review of the available evidence, guidance from worldwide professional organizations, and tips, tools, and communication strategies for healthcare teams and patient families to help navigate the risks and benefits of probiotics use.
The current prevention and treatment options for NEC are inadequate and failing our community. Although more research is urgently needed to fully understand and eliminate NEC, current evidence demonstrates that key care practices can meaningfully influence NEC rates. More specifically, research has demonstrated that probiotics may be an effective tool to help prevent NEC and death in very low birth weight infants. The NEC Society developed and released the Neonatal Probiotics Toolkit, a resource for NICU clinicians seeking to better understand probiotics use, intending to inform a decision-making process and foster discussion amongst key stakeholders specific to each unit. The Toolkit includes a comprehensive review of the available evidence, guidance from worldwide professional organizations, and tips, tools, and communication strategies for healthcare teams and patient families to help navigate the risks and benefits of probiotics use.
In 2023, 30% of NICUs in the U.S. were using probiotics for NEC prevention. Probiotic administration in preterm infants is common in much of the world but was virtually halted in the US after the FDA’s warning of the extremely rare risk of probiotic sepsis in preterm infants. Communication and collaboration amongst clinicians and patient-families surrounding probiotics have virtually stopped because options are no longer available. It is imperative that we support clinicians and patient-families working in concert to evaluate the risks and benefits of various treatments, including probiotics. Families must have a voice in what is considered an acceptable risk or benefit in the NICU. Families must have access to what has been shown to help prevent NEC. We must work simultaneously on improved safety and NEC prevention strategies as we do with all NICU care practices.
Today, right now, babies are dying from NEC. Babies like Micah, like Cash, and like Remy. These are real babies with real families and real life-shattering consequences. As these discussions surrounding biotherapeutics use in premature infants continue, the NEC Society will ensure we have a seat at the table. We are eager to contribute to building a refined pathway for probiotics with the demonstrated safety and evidence of improved outcomes for neonates. NICU families need more information about how they can protect and nurture their newborn’s health, and yet the ability of clinicians to provide accurate information and discuss protective care options with families is being hindered. Even slight variations in a unit’s NEC rate profoundly affect patient-families. It can be the difference between a child developing a devastating, life-altering, even fatal disease and a child thriving at home with their family. Just as hastily changing care practices can result in unexpected poor outcomes, stalling carries its own risk of subjecting patients to this devastating disease that may otherwise be prevented. It is critical to recognize the gravity of NEC, the shattered families who will never again hold their children in their arms, and the urgency of implementing prevention strategies while also considering the risks of inertia.
The NEC Society will continue our tireless work to partner with the FDA, CDC, and NIH so we can protect our babies from this agonizing disease. We are the ones reeling from this devastating problem, and we are compelled to build a world without NEC. Together, we can prevent NEC.
