When Viana first walked through the doors of Nemours Children’s Hospital, Delaware, she felt something she hadn’t in days: relief.
Her son, Koa, had been diagnosed with osteogenesis imperfecta (OI), a rare genetic disorder often called “brittle bone disease.” Before Koa was even born, doctors warned Viana that his chances of survival were low. “Almost every doctor I saw just gave me the same answer, that he wouldn’t live,” she shared.
But Viana believed in her baby – and found a team at Nemours Children’s who believed in him, too.
Now one year old, Koa is doing more than surviving, he’s thriving. Thanks to specialized OI care, bone-strengthening medications, and the compassionate support of his OI team including medical care and orthopaedic care, Koa is living a full and joyful life.
Though OI can be life-threatening, new research from Nemours Children’s is shedding light on a more hopeful future for these children. “Many of these babies did survive,” shares Dr. Ricki Carroll in an interview with CBS. “And not just survive – they are thriving. They’re doing phenomenally.”
For Viana, transferring Koa to Nemours at just 11 days old was a turning point. Though she arrived exhausted and anxious, she was met with warmth and reassurance. “It was like taking a breath of fresh air,” she said. “I walk in here every time not worried about his care.”
That sense of trust began on their very first night, when they were welcomed with gentle care. “When I arrived at his room and saw him for the first time, my baby wasn’t screaming. He was clean, fed, sleeping peacefully,” recalls Viana. “I wanted to fall to my knees. Finally, I was able to let my guard down. It was at that moment I knew we were in the right place with the right person, thanks to nurses Sharitta Jackson, Jenna Matteo, and Mikayla Babel.”
Throughout Koa’s stay, Viana formed close bonds with many nurses, NICU staff, and members of the OI team. They always made sure both Koa and Viana felt loved and supported. “They are extremely knowledgeable on caring for babies with Osteogenesis Imperfecta,” shares Viana.
“Nurse Sharita gave me the opportunity to be involved in Koa’s care even though she could’ve finished much faster if she hasn’t taken the time to teach me more about his condition,” says Vianna. “For that I will always be grateful Nurse Sharita was our first nurse.”
“After Nurse Jenna pushed me to sleep and take care of myself, I was surprised to find Koa was peacefully sleeping with a note that said ‘Hey Mom I’m doing great! I finished my whole bottle.’ I cried from relief and thankful that she had taken the time to write a note.”
“At the time our stay had officially reached the 2-month mark, I made a trip home which is a 2-hour drive. It was the farthest I had been away from Koa. However, I wasn’t worried because I knew he was in good hands with Nurse Mikayla.”
The journey hasn’t been easy, but Viana wouldn’t trade a moment. “That’s my heart outside of my body. That’s my soul outside of my body,” she says. “He teaches me every day how to be strong.” At Nemours Children’s Health, Koa found a team that saw beyond a diagnosis – and a mom who never stopped fighting for her son.
