James was born prematurely at 29 weeks gestation. James spent seven months in the NICU, undergoing three NEC-related surgeries and losing 25 cm of intestine. Now 13, he continues to face developmental delays and growth challenges. Eating has always been difficult, and at 9 years old, weighing only 38 pounds, he required a g-tube. After years of perseverance, James now eats fully by mouth, though the g-tube remains for supplemental water. His resilience inspires his parents daily, even as the lifelong impact of NEC continues.
“NEC’s impact extends far beyond the NICU - it shapes a child’s lifelong relationship with food, growth, and health. We need to prioritize long-term support and vigilance for survivors.”
David, James dad
What Helped
- Those who listened to our concerns and considered us as an important part of the care team
- Advocacy of nurses on behalf of James and us, especially when we were not present in the NICU
- Encouragement from doctors in post NICU follow-up visits
What Hurt
- When new teams assumed care, plans sometimes shifted unilaterally without communication or our input
- In the intensity of medical care, the essential role of parenthood and the chance for our child to simply be a kid sometimes took a backseat
- Not being able to read James’ charts
What To Do
- Interprofessional collaboration among subspecialties, particularly between medical and allied health providers
- Recognize that parents are an important part of the care team
