When Ellison Clark’s daughter was born in 2022 at just 28 weeks gestation, she required round-the-clock care, resulting in a 105-day hospital stay.
Clark’s daughter was cared for in the Neonatal Intensive Care Unit (NICU) at Novant Health’s Betty H. Cameron Women and Children’s Hospital.
“During that time, her medical team took absolutely incredible care of her, but we also learned how important it was to have people around us who understood what we were experiencing as parents,” Clark said in an email.
Clark bonded with other families during her daughter’s NICU stay, and she’s not alone. The tiny patients’ families often form special bonds with the caregivers and each other.
“You understand what it feels like to sit beside an incubator instead
of holding your baby at home,” she said. “You understand the beeps and alarms, the medical terminology, and the milestones that might seem small to everyone else but feel enormous to you. You understand the fear of a setback, and the celebration of something as simple as your baby gaining a few grams or taking a bottle.”
In the years since, Clark has remained “connected to the NICU community,” and she’s learned families can feel isolated after they leave the hospital. Working with others in the community, they decided to create an organization called the NICU Family Collective to help families navigate their NICU experience.
“Our mission is to ‘walk with families through the NICU journey,’” Clark, one of the organization’s co-founders and the executive director, explained. “We want families to know that they have a community beside them — not just while their baby is hospitalized, but after they go home, too.”
The nonprofit organization offers support to Wilmington area families with babies who are receiving care or who have previously received care in the NICU. That support includes meals for parents and caregivers, educational resources, peer mentorship, and a welcome gift.
The nonprofit organization is not afiliated with any hospital or medical group and provides services to families at no cost.
One of the organization’s recent milestones came in September when it hosted a NICU reunion, allowing families to connect and celebrate their journeys. The free community event was held at Plaza on Princess in Wilmington.
Clark said seeing the families reunite was “incredibly emotional.”
“As a NICU mom myself, I know what it means to be in that hospital and wonder what your child's future will look like,” she said. “So, seeing these children now — running around, playing, growing, and just being kids — is incredibly powerful.”
She also said it was “even more meaningful to see the families and healthcare providers connect.”
“You can look at a NICU graduate and know that a whole team of people helped that child get to where they are today,” Clark said.
Clark hopes to see the NICU reunion become an annual event.
To learn more or to donate, visit the organization’s website at nicufamilycollective.org.
Renee Spencer is the community engagement editor at the StarNews. Reach her at rspencer@usatodayco.com.
This article originally appeared on Wilmington StarNews: Tiny patients, lasting bonds keep the Wilmington NICU community growing
