Charlie

Leading up to Charlie’s birth, Charlie’s doctors suspected he had what is known as “bladder outlet obstruction”, a blockage at the end of the bladder. Such complications could cause kidney damage. Ultrasounds were performed regularly and his mom was monitored closely.

On July 9, Charlie made his entrance into the world. Charlie had bloodwork drawn the following morning, which revealed dangerously high creatinine levels. Charlie’s care team promptly planned for his transport from his local hospital to SSM Health Cardinal Glennon Children’s Hospital. The pediatric nephrologist told Charlie’s parents that he was in stage five kidney failure. Charlie had his dialysis catheter placed one week after he was born.

After spending 96 days in the Neonatal Intensive Care Unit (NICU) and three days on the Transitional Care Unit (TCU), Charlie was discharged. He was sent home receiving continuous peritoneal dialysis for 18 hours per day. Slowly, over the next two years, he was able to wean down to 12 hours per day. Charlie finally reached the height and weight requirements for transplant, and his team felt it was time to move forward. Charlie was placed on the list for a kidney transplant in March 2019.

Charlie got sick later that year, and unfortunately had to go off the list for a long time. In March 2020, Charlie was placed back on the list for a transplant. In September 2020, Charlie’s parents got a call from the transplant coordinator about a potential donor for Charlie. After testing and conversations, it was decided Charlie would not receive this kidney. It was recommended that Charlie be taken off the list for a bit and revisit putting him back on it when Charlie’s condition worsened.

In early 2021, Charlie was hospitalized twice for peritonitis – a peritoneal dialysis-related infection caused by bacteria entering the abdomen from outside the body and infecting the peritoneum. Charlie was placed back on the transplant list.

In Spring of 2021, a fellow church member approached them with interest in donating her kidney to Charlie. She completed all of the testing and was a four point match. Transplant day arrived January 27, 2022. Surgery lasted five to six hours and Charlie recovered in the Pediatric Intensive Care Unit (PICU). He continued recovery in the PICU for six days, and then spent the next two weeks in the TCU before being discharged home.

There may not be any more dialysis to manage at home, but Charlie’s family has a full plate of responsibilities to manage. Charlie has 8 different medications; some of which he takes multiple times a day. He has labs and doctor visits on a regular basis.

How CMN funds help Charlie and kids like him:

Charlie’s family feels fortunate to have the Child Life Specialists at Cardinal Glennon walk this journey with them every step of the way. Child Life Services has been an integral part of Charlie’s transplant journey at Cardinal Glennon.