Caring for Kyllian

“The nurses, the staff and the doctors, those were the people who experienced this with me. Some of the staff had even had NICU experiences of their own, and they were vulnerable with me in a traumatic time. They made me feel like I wasn’t alone. They made me feel like I was a part of the team ... I consider them family.” —Kelsey, mom to Kyllian

When Kelsey learned that her unborn baby would need complex medical care, she was scared. Her obstetrician referred her to our fetal medicine program, where doctors told her that her baby’s kidneys were enlarged, and he would likely need dialysis immediately following his birth. Randa Razzouk, M.D., a nephrologist at Cook Children’s, helped ease her fears.

“Dr. Razzouk helped me understand that it wouldn’t be the end of the world if he needed dialysis,” Kelsey said. “It’s a manageable thing. That was helpful in alleviating my fear.”

Kelsey gave birth to her son, Kyllian, at a hospital near our Fort Worth medical center. While Kelsey recovered, Kyllian was transported to our Neonatal Intensive Care Unit (NICU) to begin treatment for end-stage renal failure.

When Kelsey had to return to work, she visited Kyllian in the evenings and on weekends. She said that having a private room allowed her to come and go as she needed to, without disturbing other families.

“It gave me some space to get to know him and care for him without getting in anyone’s way. It was everything,” Kelsey said. “It made a huge difference to have privacy to connect with him and the people caring for him.”

As a single mom with few family members in the area, Kelsey relied on her son’s team of caregivers for support during emotional times.

“The nurses, the staff and the doctors, those were the people who experienced this with me,” Kelsey said. “Some of the staff had even had NICU experiences of their own, and they were vulnerable with me in a traumatic time. They made me feel like I wasn’t alone. They made me feel like I was a part of the team ... I consider them family.”

One staff member in particular made a significant impression on Kelsey. Christy, a licensed clinical social worker on our Spiritual Care team, helped Kelsey understand and process the emotions she experienced during the ups and downs of Kyllian’s journey in the NICU.

“In the first few weeks, Christy was there every day,” Kelsey said. “She would come in and talk to me, and she would help me assess where I was at and my mental space. She helped me process, and she recognized that I was experiencing active trauma. She helped me maintain a healthy and rational perspective on my experience.”

After 112 days in our NICU, Kyllian was discharged and finally went home with his mom. His journey is far from over, though, and he continues to visit our Fort Worth medical center to receive treatment for his complex condition.

Many of the resources available to families in our NICU are made possible by the generosity of our communities. Though many of our donors do not spend their days within the walls of our medical centers, their gifts connect the dots for families like Kyllian and Kelsey and the care they need.

“Donations make a massive difference … it’s not a wasted investment,” Kelsey said. “Just look around and walk through Cook Children’s. Interact with the patients and the care providers here, and you can see, plain as day, where that money goes and the good that it does. It saves lives like my son’s.”