Nicco and Pete are a dynamic father and son duo who frequently visit Lurie Children’s for appointments and overnight stays. Nicco, 9, has Down syndrome and Hirschsprung’s disease, a condition that affects the large intestine as a result of missing nerve cells in the colon. Whether he’s at home or at Lurie Children’s, his parents and two siblings all work together to make sure Nicco’s needs are met. They also learn a lot from Nicco, Pete says. “When you have a kid with challenges, particularly in how he communicates with the world, you have to teach yourself to pay attention in new ways.”
That’s why Pete coined a special hashtag: #ThingsNiccoTaughtMe. With photos and quotes from Nicco, Pete documents moments from the time they spend together in the hospital, at doctor’s visits, at home and everywhere in between. Some of Nicco’s most valuable lessons? Always make time to be silly, put family first, and make an effort to start every morning off right.
“Nicco was actually a patient since Day 1,” Pete says. As a newborn baby, Nicco was transferred from the neonatal intensive care unit (NICU) at Children’s Memorial Hospital in Lincoln Park to the new Lurie Children’s facility in Streeterville in 2012. “He spent his first six months under the care of the NICU team.” Since then, Nicco has continued to see a host of specialists at Lurie Children’s; throughout his childhood, he has undergone several heart and gastrointestinal surgeries, and also receives care from ENT specialists and the motility clinic.
“Nearly 10 years in, Lurie Children’s is a fixed part of our lives,” Pete says. 100% of his care is through individuals associated with it. The doctors know him so well, the APNs and pediatric surgery nurses have watched him grow up. We consider this place when life choices come up, like which jobs to take or if we’d ever move out of the area.”
“It’s a team effort,” Pete says. “I don’t get to give him the time he wants and needs when he’s in the hospital without a great wife able to keep the family going on the home front.” Nicco also has two siblings, Sofia, 11, and Zander, 7, who are understanding when it comes to their brother’s needs both in and out of the hospital.
“Balancing his needs and the needs of his siblings is extremely hard,” Pete says. “I’m sure many families in medically challenged homes struggle with it. They often miss out on time and sacrifice opportunities because of the medical needs of their brother. As a parent, watching that sacrifice is hard and yet I’m extremely proud of how they handle it.”