Family Stories
The NEC Society shares stories to show how real families and clinicians are affected by this devastating disease. Our stories demonstrate the urgency of our mission.
If you have been touched by NEC, please share your story to help advance the NEC Society’s work and impact.
Turning pain into power through storytelling
Discover the powerful stories of families affected by necrotizing enterocolitis (NEC). These stories highlight the urgent need for a world free from NEC. We are deeply grateful for the bravery of the families who have battled NEC and courageously shared their journeys with us. By opening their hearts to convey their grief, love, and hope, they help us confront the harsh reality of this disease. Their experiences inspire a shared vision for a future without NEC, honoring the strength and resilience of every child and family touched by this challenge.
Pediatric Research Journal: Family Reflections
One way the NEC Society propels research, education, and advocacy is by elevating patient-family voices for our community of clinician-scientists. We have published four family reflection pieces in the journal Pediatric Research.
Family reflections: the fight for a world without NEC continues
Written by Tabitha Pazmino, in honor of her daughter, Gabriela Grace.
We must keep fighting for a world without NEC for babies like my daughter, Gabriela Grace. Gabriela was born at 26 weeks gestation, weighing just over 1000 grams. Despite her prematurity, I was hopeful. After all, she and I managed to survive being diagnosed with preterm premature rupture of membranes (PPROM) and being bedridden for 6 weeks…
Family reflections: NEC families are partners in research
Written by Lelis Vernon, in honor of her twin sons, Charlie and Bobby.
After my twin sons were born at 25 weeks gestation, each weighing 1 pound 11 oz, I spent every day at their bedside. I was eager to learn and do all I could as their mother. Ten days after they were born, our lives changed forever. On the morning of November 10, 2003, I watched the neonatologist approach me with a look of deep concern…
Family reflections: living with hope and heartbreak after NEC
Written by Elaine Turk Nell in honor of her daughter, Lydia.
There are areas of our home that resemble a hospital or pharmacy. Medications and related supplies fill kitchen cabinets and counters. An intravenous (IV) pole with an attached feeding pump is in a bedroom. Various medical supplies are stuffed under beds and in closets. Medications and bottles of formula line refrigerator shelves…
Family Reflections: harnessing the power of families to improve NEC outcomes
Written by Jennifer Canvasser in honor of her son, Micah.
Despite doing everything “right,” my twins, Micah and Zachary, were born at 27-week gestation, each weighing just over 1100 g. I had never stepped foot into an intensive care unit, had never seen a breast pump, and was completely overwhelmed by feelings of guilt and anxiety. Gradually, my twins and I became more competent at our tasks at hand…
