Neonatal Research: Hazel’s Story

Meet Hazel

Born at just 24 weeks and weighing less than a pound, Hazel’s fight for life began the moment she entered the world. From emergency surgery to months in the NICU, her journey is a reminder of how expert care and groundbreaking research at Children’s Mercy can change everything.

When Hazel entered the world at just 24 weeks, weighing only 13.2 ounces, her parents, Nikki and Cory, could hardly imagine the challenges ahead. Within hours of her birth, Hazel faced a life-threatening condition called necrotizing enterocolitis (NEC), a severe gastrointestinal disease, and required emergency surgery for a perforated intestine. She was flown by helicopter to Children’s Mercy, where a team of specialists worked tirelessly to save her tiny life.

“By the time we drove up there, she was coming out of surgery,” Nikki recalled. “One of the surgeons even said, ‘She’s lucky to be alive. Most babies don’t make it.’ We weren’t understanding the gravity of what NEC was or what that meant.”

Hazel’s fight didn’t stop there. Along with NEC, she battled bronchopulmonary dysplasia (BPD), a chronic lung disease that eventually required a tracheostomy. For the first eight months of her life, Hazel needed a breathing tube, making even the simplest moments — like holding her — an exercise in patience and care.

Every wire and tube connected to Hazel was critical to her survival. Her breathing tube, IV lines and monitors meant Nikki and Cory had to sit and hold her very still, with everything taped carefully to their shoulders. Any movement could dislodge a line or compromise her airway. “We wanted to comfort her, to rock her, but all we could do was stay still and let her hear our voices and feel our heartbeat,” Nikki said. “It was incredibly hard.”

Over her 378-day stay in the NICU, Hazel became part of the Children’s Mercy family. Her parents found comfort in the compassionate care of the team, including Venkatesh Sampath, MBBS, MRCPCH, a neonatologist who often visited Hazel.

“He was so personable and always came out to the bedside,”

Nikki said. “If we had questions, he had no problem following back up, making sure at the end of the day we were comfortable and understood what was going on. That really meant a lot.”

Dr. Sampath’s role in Hazel’s story went beyond clinical care. As Director of the Neonatal Diseases Research Program, he leads groundbreaking studies aimed at preventing and treating conditions like NEC and BPD — the very diseases Hazel was fighting. His research focuses on understanding why these illnesses occur and finding safer, more effective treatments for fragile preterm babies.

One of his current studies explores how genetic mutations affect the intestinal barrier in premature infants, contributing to NEC. Another investigates a new medication designed to prevent BPD without harming brain development — a major improvement over traditional steroid treatments. These efforts are paving the way for therapies that could transform care for babies like Hazel.

It was during Hazel’s hospitalization that Dr. Sampath approached Nikki and Cory about participating in a research study on NEC. The study required only a few blood draws, and the decision was an easy one.

“There are going to be other babies like Hazel, and if we can help and not risk Hazel’s life in the same moment, we absolutely were open to it,” Nikki said. “Hazel wouldn’t be where she is without research. We were so lucky she was alive. So, we were like, ‘Yeah, if we can help, yes.’”

For Dr. Sampath, moments like these underscore why research matters. “When you share knowledge, you’re impacting the care of hundreds, even thousands of babies,” he said. “That’s why we do this — to give every child the best chance.”

Today, Hazel’s story is one of resilience and hope — a testament to the power of expert care, family love and bold science. While her journey was filled with challenges, it also inspired progress that will help countless other babies have brighter futures.

Learn more about the Level IV Neonatal Intensive Care Unit at Children’s Mercy.