Charlie and Bobby, twins, both developed NEC overnight. They both endured multiple surgeries, ostomies, and transfusions just to survive.
Though Charlie and Bobby eventually left the NICU, NEC has left a lifelong mark on their bodies and on their lives. Now, as the twins approach adulthood, they continue to live with the devastation of this disease.
“We left the NICU, but NEC left a lifelong mark on their bodies, and on our family.”
Lelis, Charlie and Bobby's mom
What Helped
- Empathy and compassion from the care team
What Hurt
- All the uncertainties surrounding NEC
- Feeling isolated
What To Do
Communicate with compassion and clarity
- Include families as partners in care
- Advocate for advanced NEC research
