Family Stories
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
We are deeply grateful to the families who courageously share their stories with us.
Video Stories
Family Stories
If you are interested in recording your story for us to feature as a video, please email Sarah@NECsociety.org
Written Stories
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 five family reflection pieces in the Pediatric Research Journal and the World Journal of Pediatric Surgery.
Raising a child with NEC and the need for multidisciplinary care
Written by David Russell, JD
Published in World Journal of Pediatric Surgery
The steady pulse of monitors and pumps fills the room while I hear the clinical team assembling out in the hall. This all too familiar scenario briefly takes me back to our days in the neonatal intensive care unit (NICU), where my son spent his first 7 months. Yet on this day, this is the backdrop as we prepare for his third surgery to place a g-tube in the last 7 days…
The fight for a world without NEC continues
Written by Tabitha Pazmino, in honor of her daughter, Gabriela Grace.
Published in Pediatric Research Journal
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…
NEC families are partners in research
Written by Lelis Vernon, in honor of her twin sons, Charlie and Bobby.
Published in Pediatric Research Journal
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…
Living with hope and heartbreak after NEC
Written by Elaine Turk Nell in honor of her daughter, Lydia.
Published in Pediatric Research Journal
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…
Harnessing the power of families to improve NEC outcomes
Written by Jennifer Canvasser in honor of her son, Micah.
Published in Pediatric Research Journal
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…
Lessons from Families
Learn from families impacted by NEC who participated in the NEC Symposium in Chicago. Each family shared what they found helpful during their family’s experience in the NICU, what they found to be hurtful, and what care teams should consider to ensure the patient-family experience is centered in their NICU. We are deeply grateful to the families who courageously share their stories with us.
