Ariela Martin Photo
Roberta and Gianni Ferrucci.
Gianni Ferrucci’s family was told that he would not live past his second birthday. Now that he’s 3 years old, Roberta Ferrucci, his grandmother, “knows God listened to my prayers. He’s my miracle.”
Ferrucci was born with vanishing gastroschisis, a disorder that occurs in 1 of every 4000 babies, resulting in an abdominal wall defect that requires repair. With more than six surgeries, Ferrucci spent 180 days in the NICU.
Thirty families including the Ferruccis who have overcome the struggles of having an ill or premature newborn came together Thursday night — to celebrate.
They gathered at the Neo-Natal Intensive Care Unit (NNICU) of the Yale-New Haven Children’s Hospital along with extended families, staff, administrators, and former patients for a ribbon-cutting ceremony launching “The Wall of Hope.”
The display, at the entrance to the fourth-floor NNICU unit, features portraits of of children who spent their first days in the unit.
Photographer Jacklyn Greenberg volunteered to shoot the portraits. Over the summer, Greenberg photographed over 30 children in four days at a local park.
“I tried to capture each child in the moment where they were showing their most amount of hope and strength,” Greenberg said.
The Newborn Intensive Care Unit Family Advisory Council came up with the idea to create “The Wall of Hope” as a way to provide a feeling of comfort and ease for families going through the journey at the NICU.
Cynthia Sparer, the executive director of the Children’s Hospital and vice president of women and children’s services, spoke at the event.
A prayer was said before the ribbon was cut, to inspire future families, patients, and nurses who will go through a journey similar to the ones of the many families gathered in the room: “May they trust in the potential that is yet to be. When in the midst of new life, there is fear. May they know that others have walked this journey before them. May they find the inspiration to go into each moment, the next day, the next month assured that those that they love are in healing and caring.”
“Taking care of preemies is rewarding. It’s wonderful to get to know families and understand their individual situations. You become a part of the whole process with the families, and it’s very rewarding,” said Amber Natusch, a registered nurse in the NNICU. “We start with the preemies in the delivery room. We take them in, and we give them respiratory support, cardiac support, and on top of that, support the families. It’s probably one of the worst situations a parent can be in, so it’s important to give the parents a lot of emotional support too. No one expects to have a premature baby.”
Debra Streater with her granddaugher, Destany Vincent, who was in the NNICU for eight days because she was born with fluid in her lungs.
Linnea Lang joined Natusch at the event in support of their former patients. “It’s definitely a roller-coaster ride,” she said. “With every step forward, there’s always a step back. The families are a great part, and it’s great building relationships. You watch as they go from teeny tiny preemies to big kids. Watching them grow up is amazing, it’s hard to believe they’ve come so far.”
Under each photograph is a statement with the child’s name, age, time spent in the NNICU, original birth weight, and current interests and hobbies.
Gianni’s hobbies include “riding a quad.”
He was asked to stand and pose next to his photograph. “Smile!” his family yelled in encouragement. “Like you do when you’re riding your quad!”