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 of a long fight and that my son would ultimately die from complications of this disease just before his first birthday.

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 among the leading causes of infant death in the United States. The babies who do survive 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 passed away. Babies die from NEC. Every. Single. Day.

Why?

With all of the research and medical advancements, why haven’t we found a way to prevent NEC? Why haven’t we figured out how to better treat the disease? Why is there a gap between NEC literature and NICU practices? Why isn’t there more being done to prevent this costly, deadly neonatal disease?

Micah’s death compelled me to launch the NEC Society and every other family that continues to be affected by NEC compels me to keep going. 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 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 matter to patient-families. Together, we will build a world where babies like Micah never have to battle this phantom-menace of a disease.

You can learn more about NEC by visiting: 9 Things You Need to Know About NEC