The first time I heard, “Necrotizing Enterocolitis” (NEC), my son Micah was critically ill. I tried desperately to keep myself together and listen as his healthcare team explained this deadly disease. But, all I could focus on was Micah. In a matter of hours, he went from looking like a beautiful five-pound baby, to a critically ill infant with cords, wires, and tubes on each of his extremities.
Late that night when I was alone, I screamed and sobbed. I was terrified of losing Micah and desperately wanted to protect him. Little did I know this was just the start to a very long fight that my son would ultimately lose.
NEC is a life-threatening neonatal condition that causes the death of intestinal tissue. During Micah’s downward spiral, I searched for information and resources related to NEC, but there was surprisingly little available. There was no NEC association. There was no NEC council. There was no organization committed to reducing the incidence of NEC. NEC is a leading causes of infant death in the United States. The babies who do survive NEC often struggle with lifelong complications. NEC affects thousands of babies every year.
NEC stole my baby’s life. The loss of a child is tragic and devastating. There is no healing. It is a lifelong loss. A piece of yourself dies along with your child. It took me a year to learn how to live without Micah in my arms. During this time, I heard story after story of other babies struggling with NEC. Unfortunately, many of them also lost their battle. Babies lose their life to NEC. Every. Single. Day.
With all of the research and medical advancements, why haven’t the NEC rates changed in decades? Why haven’t we figured out how to prevent this devastating disease? Why is there a gap between NEC literature and NICU practices? Why isn’t anyone talking about this common, costly, deadly neonatal disease?
The NEC Society is committed to building a world without NEC. We are bringing together internationally recognized NEC researchers and clinicians, along with driven patient-families who have been personally impacted by NEC. We are empowering patient-families with information and resources. We are challenging providers, hospitals, and our community of stakeholders to do more so we can improve outcomes for our most vulnerable babies. We are propelling patient-centered research to ensure we are asking questions that actually matter to our families. Together, we will build a world where babies like Micah never have to battle this phantom-menace of a disease.