Pediatric CKD Patient Thrives After Treatment at Arkansas Children’s Hospital

When 18-month-old Ruby was referred to Arkansas Children’s kidney clinic in November 2016, she was already in kidney failure and nearing the need for dialysis.

“Ruby had pretty significant kidney failure by the time she presented to us,” said Saritha Ranabothu, M.D., pediatric nephrologist and transplant director at Arkansas Children’s Hospital and associate professor of Pediatrics in the Division of Nephrology at the University of Arkansas for Medical Sciences (UAMS). “She already had complications related to chronic kidney disease, including anemia and improper growth.”

The nephrology team discovered that she was born with a single dysplastic kidney and needed a kidney transplant. But due to her small size and overall condition, she was not a transplant candidate at the time of diagnosis.

"Size is the main problem for our pediatric patients," Dr. Ranabothu said. "When Ruby presented, she was 9 kilograms, and she needed to gain at least 3 kilograms. But in kidney failure, you won't grow because your appetite is not good and the uremic toxins in your body prohibit growth. Ruby needed dialysis to grow and become stable from complications."

With dialysis and a feeding tube, Ruby gained weight, and in November 2017, a year after she entered the kidney clinic, she received a kidney transplant. Ruby's procedure went well, and the nephrology team watched her progress closely in the weeks and months after the transplant.

A Team Approach to Care

The Arkansas Children's Hospital nephrology team collaborates to ensure they do everything possible to set patients like Ruby up for success. Pediatric patients are seen three days a week for the first few weeks after a transplant and then monthly for the remainder of the first year after surgery. If they remain stable, visits occur once every three months.

"The problem with kidney failure is that there may not be any signs or symptoms," Dr. Ranabothu said. "That's why we do labs every three months. We may not see subtle changes in kidney function without seeing lab results."

A common obstacle for pediatric patients is medication adherence, especially as young patients like Ruby get older and become self-conscious about ways they differ from their peers, such as by needing to take medication.

"Even though parents and families do a great job, we always ask if there are any barriers to taking medication so we can help overcome them," Dr. Ranabothu said. "We implemented this new process of determining the barriers to taking medication as the first step to addressing them and thus improving adherence. Our aim is to support patients and families so they don't lose the desire to continue taking medication."

All transplant patients see a nutritionist, as many children struggle with weight gain and obesity after their appetite returns to normal. A social worker also follows up to check on the patient's and the family's overall well-being.

Five years after her transplant, 6-year-old Ruby is thriving. Her kidney function is at approximately 60%-70% and she doesn't have any other symptoms.

"She is doing great; this has been life-changing for her," said Betsy, Ruby's mother. "She has come out of her shell, physically and emotionally. She's excited about life. The nephrology team here is amazing."

Advances in Care

Arkansas Children’s Hospital has established a new advanced chronic kidney disease (CKD) clinic, designed for children who have a glomerular filtration rate of 30 or less — children who don’t need dialysis yet or may not yet qualify for a transplant but are close.

“The primary reason we started this clinic was to boost the number of kids who get preemptive transplants before needing dialysis,” said Rachel Millner, M.D., pediatric nephrologist at Arkansas Children’s Hospital and assistant professor of Pediatrics in the Division of Nephrology at UAMS. “We know preemptive transplant improves the quality of life for kids and families.”

The team also strives to educate families about the various treatment options available.

"When we opened this clinic, we found that there was a lot of variability in what families were told between different providers and hospitals about how to manage advanced stages of chronic kidney disease," Dr. Millner said. "My hope in establishing this clinic is that we can give families all of the information they need to make good choices for their kids."