Charlie Flemming and his sister

Charlie Fleming has proved he’s a fighter since the day he was born.

Charlie was born in December 2014 in Des Moines with Shone’s complex, a rare heart condition that limits blood flow to the body. An emergency intestinal surgery at only 1 day old delayed the surgery he needed to stabilize his heart.

Charlie was transferred to University of Iowa Stead Family Children’s Hospital to recover for heart surgery. But within the week, his failing heart led to a stroke and caused his kidneys to shut down.

“That month was the hardest time,” says Charlie’s mom, Autum. “Being in the PICU (Pediatric Intensive Care Unit) is always a roller coaster. While he steadily improved, there were a lot of days where he slipped back.”

At that point, Charlie’s kidney failure was his most life-threatening problem. His heart was too weak to handle hemodialysis, which takes blood from the body, cleans it, and sends it back. Instead, Charlie’s team used peritoneal dialysis, a gentler process that involves putting fluid into the space inside his belly around his organs to flush out the waste.

It’s gentler on the Flemings’ family life, too. Autum and Charlie’s dad, Brad, of Nevada, Iowa, quickly became adept at handling the procedure. They now do dialysis at home every night while Charlie sleeps, allowing the family, which also includes Charlie’s 4-year-old sister Cayla, to maintain a more normal routine. Traveling is easier, too. On a family Christmas visit to Minnesota, they simply took the peritoneal dialysis equipment with them.

“He has cleared some major hurdles,” says Kathy Lee-Son, MD, a pediatric kidney specialist with UI Stead Family Children’s Hospital, which is home to the most comprehensive kidney treatment program in the state, including the only pediatric dialysis center. “He’s like a little miracle of a kiddo. But much of his success is due to his parents. They are astute, and they are his advocates.”

Because of all his complications, Lee-Son and her colleagues must strike a
delicate balance between continually advancing Charlie’s progress while never outpacing his health. Lee-Son says that listening carefully to his parents’ wishes is key to guiding their plans.

“We put the family in the forefront of our approach. The parents’ goals lay out a map of where they want to go, and then we specialists can work together to come up with a plan to get there,” Lee-Son says.

Given his rocky start to life, Charlie has made remarkable progress. Autum calls him “super stubborn and super social.” Heart surgery and medication have stabilized his heart, a tracheostomy helps him breathe, and he has physical therapy for the effects of the stroke. A recent surgery replacing the feeding tube in his nose with one that goes directly into his belly will be a big step forward in improving his quality of life, says Autum.

She also credits Lee-Son with coordinating Charlie’s multidisciplinary team of cardiologists, surgeons, neurologists, respiratory therapists, nurses, gastrointestinal doctors, palliative care, and nephrologists. Together, they keep his care and progress on track.

“The teamwork has been really nice,” Autum says. “Dr. Lee-Son has gathered together all the different specialties to talk about what we need to move forward.”

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