Ronan was born prematurely at 28 weeks gestation with intrauterine growth restriction due to pre-eclampsia. In the NICU, he initially struggled to gain weight, and his feeds were advanced in hopes of supporting his growth. Along the way, Ronan faced a couple of “scares” that required periods of bowel rest.
Ronan began making wonderful progress, and his loving family held onto hope for a smoother road ahead. However, when Ronan was seven weeks old, he took a turn and was diagnosed with NEC.
Ronan required emergency surgery and underwent a partial bowel resection. Just one day later, Ronan tragically developed NEC totalis and passed away in his mother’s arms, surrounded by love.
“I wish I had been included in every care discussion. We need our voices heard so we can advocate for our babies.”
Nicola, Ronan's mom
What Helped
- A care team that advocated for Ronan
- Being included in daily rounds
- Connecting with other NICU parents
What Hurt
- Not feeling heard
- Restriction of visitors
- The isolation of the NICU
What To Do
- Trust a parent’s instincts
- Include the parents in every care discussion
- Advocate for increased NEC research on behalf of NICU babies everywhere
