NEC Society
By Leslie Napolitano, artist of the Tree of Courage, whose grandson died from NEC
Leslie Napolitano with her grandson, Micah
My grandson Micah developed necrotizing enterocolitis (NEC) when he was nearly six weeks old, after being born just shy of 28 weeks gestation. Like many babies who develop NEC, Micah went from being stable to critically ill in a matter of hours. Miraculously, Micah pulled through several weeks of uncertainty, and he slowly began to improve. Still, he remained in the Pediatric Intensive Care Unit (PICU) for several months, until he finally came home for the first time when he was 10 months old.
To support Micah’s parents, I was fortunate to spend time with Micah in the PICU, where I bonded with Micah’s nurses and care team. Several months later, when Micah came home, I felt inspired to create something beautiful to reflect our family’s journey, Micah’s battle with NEC, and his incredible providers. So, I started painting.
The view from Micah’s PICU room
Micah’s PICU room overlooked the arboretum, so the vision of a tree came easily. The roots, branches, and strong, sturdy trunk, represented the strength, love, perseverance, trust, and relationships that blossomed during the most joyful and dreaded moments of Micah’s journey. The intensity and colors within the Tree of Courage symbolize the triumphs, setbacks, devastation, and sacrifices.
With Micah finally at home, I focused on painting. As I painted, I reflected on Micah’s journey and how his parents had to make tough decisions, have difficult conversations, persevere through exhaustion, and the pure joy that we all felt when Micah came home for the very first time. I thought about his nurses and doctors, who spent months getting Micah strong and stable enough to come home.
Just one month after Micah came home, he was re-admitted to the PICU; I still had not finished the Tree of Courage. During the day, I continued to paint. During the night, I spent time with Micah so his parents could rest at home. We were eager to get Micah back home to his family.
Micah’s surviving twin brother, Zachary, with the unfinished Tree of Courage
Devastatingly, Micah never came back home. Despite having the most committed care team and the most devoted family, Micah passed away from complications of NEC when he was 11 months old. Everyone who loved Micah was heartbroken. And I still had not finished the Tree of Courage.
Late at night, after being strong for my daughter, her husband, and Micah’s surviving twin brother, I released my anguish into the paintbrush. I had never felt such intense emotions as I grieved for my grandson, as well as for my daughter and her husband who had just lost their firstborn child. Every stroke of paint on the Tree of Courage was inspired by Micah’s strength and bright smile. If Micah could smile through his countless surgeries and daily struggles, then I surely could find the strength to honor him and his care team through this painting. Days later the Tree of Courage was complete, yet our hearts were shattered.
We displayed the Tree of Courage at Micah’s life celebration, where dozens of Micah’s nurses, physicians, and social workers joined us. After seeing their reaction to the Tree of Courage, our family agreed that we should donate the painting to the PICU, to celebrate their extraordinary commitment to families just like ours.
We were honored when they let us know the Tree of Courage would be hung prominently in the PICU next to the Wall of Courage, a display with dozens of children’s photos who have spent time in the PICU over the years. While the Tree of Courage was inspired by Micah’s smile, our family’s love, and his care team’s dedication, the painting is for every family and provider who have persevered through unfathomable heartache and created something beautiful in its aftermath.
A customized and dedicated canvas print of the Tree of Courage for baby Aubrey and her family.
Tree of Courage canvas prints and note cards are available on Etsy and in the NEC Society’s online shop. All proceeds support the NEC Society’s vision of building a world without necrotizing enterocolitis.
Such an inspiring yet emotional story! These stories are the reason I’ll NEVER give up raising awareness and advocacting for not just myself, as a survivor living with the Long-term complications, but for everyone impacted by this devastating disease!