Luna was born at 27 weeks gestation, after being diagnosed with intrauterine growth restriction (IUGR). Initially, Luna thrived and surpassed expectations in the NICU. She loved showing off her own feisty, fiery personality at just a few days old.
Despite her strength, Luna developed NEC at 33 days old. She underwent surgery, but the disease moved too aggressively. Luna had total necrosis.
Tragically, just a day after her NEC diagnosis, Luna passed away in her loving parents’ arms at 34 days old.
“Every memory, milestone, and moment I have with my daughter happened inside the walls of the NICU.”
Stephanie, Luna's mom
What Helped
- Providing hands-on care to Luna
- Having pictures taken of us as a family
- Having open communication with Luna’s care team
What Hurt
- Lack of timely and thorough information about NEC, including the risks, symptoms, and outcomes
- Apathetic communication
- Detached, disconnected care team members
What To Do
- Provide resources and information about NEC
- Remember, every patient in your care, is every parent’s world
- Include parents as the most important member of a baby’s care team
