For 1-year-old Sawyer Caudill, Riley Hospital for Children at Indiana University Health will always be a second home.
When Sawyer was 10 months old, Riley Transplant Surgeon Richard Mangus, M.D., performed a life-saving liver transplant to combat a rare genetic metabolic disorder called Ornithine Transcarbamylase Deficiency (OTC). Babies with OTC are unable to perform the body’s necessary metabolic functions without producing increasingly toxic levels of ammonia. If undiagnosed, the ammonia levels can become fatal.
Sawyer’s parents, Maggie and Jeff Caudill of Richland, Ind., knew of the disease prior to Sawyer’s diagnosis because Maggie’s baby brother died from the condition 28 years ago. When the couple decided to have a baby, they first attended genetics counseling to learn more about treatment options if their baby were to test positive for the condition.
Once the pregnancy was confirmed, a specialty lab test was ordered. Sawyer tested positive for the condition, so a care plan was put in place. Five weeks prior to her due date, Maggie moved to Indianapolis since Riley offers the only children’s metabolism clinic in the state and Sawyer would need immediate care following his birth.
On May 11, 2015, Maggie gave birth to Sawyer via cesarean section at IU Health Methodist Hospital. Within two hours, Sawyer was transported to Riley.
Maggie easily describes the past year as a whirlwind for her family. However, she struggles articulating the care Sawyer has received. “I don’t know if I can ever explain what Riley has meant to us,” Maggie said. “He will grow up here. Being a transplant patient, we’re attached to this hospital for life.”
Having spent the greater part of a year at Riley, Maggie views the staff as family. “Dr. (Christopher) Griffith, Dr. (Melissa) Lah and Dr. (Bryan) Hainline are the reason we are here,” Maggie said. “They were completely in my corner and on my side. I don’t know how I would have made it through without them.”
Maggie is also appreciative of the relationships she built with the Child Life Specialists. They are Sawyer’s cheerleaders and a constant source of comfort and support for Maggie. Certified Child Life Specialist Kristin Brown works to promote a sense of normalcy for Sawyer and his family.
“During his last stay before his transplant, we went through several holidays,” Kristin said. “We did normal crafts he would be doing if he was going to a normal daycare. We made things to send to his grandparents and sisters back home to help bridge that gap.”
These craft projects make a world of difference for Sawyer’s family. “If not for the artwork, the only thing I would have of him are pictures of tubes everywhere,” Maggie said. “How do you say thank you for that? You can’t.”
Maggie jokes she will be inviting the Riley staff to Sawyer’s wedding someday. “These will just be his people. He won’t think anything different because they’ve been around his whole life,” Maggie explains. “They will watch him grow up.”