Introducing our 2024 Child Ambassador

At birth, Everett was diagnosed with a rare condition called Eagle-Barrett syndrome, also known as prune belly syndrome. The condition is characterized by underdeveloped abdominal muscles and includes urinary tract and kidney complications. Before he was born, doctors anticipated that he would require a kidney transplant. Despite lacking a complete set of abdominal muscles, he managed to achieve milestones like sitting up, crawling and walking because of early intervention through physical therapy.

Everett spent much of his early life in Monroe Carell Jr. Children’s Hospital at Vanderbilt between his time in the Neonatal Intensive Care Unit and undergoing multiple surgeries. In June 2023, on his third birthday, he received a kidney transplant, with his father, Matthew, as his donor match.

 All was going well with Everett’s recovery until the day before he was to be discharged from the hospital. He developed a fever, and doctors discovered that the kidney was failing. After a few weeks of trying to save the kidney, doctors removed it, and Everett started on dialysis.

 Everett unfortunately suffered damage to his heart during the process of working to save the kidney and transitioning to dialysis. He has been on peritoneal dialysis since November 2023, and once his heart recovers, he can be added to the list for another kidney transplant.

Throughout his health care journey, Everett’s family has remained grateful for the coordinated care his Monroe Carell medical team continues to provide.

 ”We feel like Monroe Carell Jr. Children’s Hospital at Vanderbilt has been a part of our family since day one,” says Everett’s mom, Margaret. “We are so grateful to have this hospital so close by and for the care we have received. We have always been confident in Everett’s care team.” Margaret credits Kathy Jabs, MD, for looking at Everett’s care from the whole picture and speaks highly of his entire medical team at Monroe Carell. “There are so many specialists involved in his care, and Dr. Jabs makes sure all bases are covered and everyone is aligned.”

 Today, Everett is 3 years old, and he exudes joy, curiosity and an unyielding love for life. His visits to the hospital still fill him with excitement, and he has developed a very robust medical vocabulary and knowledge of the medical procedures he undergoes. He wants to be a firefighter when he grows up and is an enthusiast of vehicles of all kinds.