Ava Hope Pena with nephrology team at LCH

Child Health | 11 months ago

A Lifetime of Progress for Kids with Kidney Disease

In just 10 years, the nephrology program at Levine Children’s Hospital has made tremendous strides in helping kids with kidney conditions lead healthier lives. See why our program is recognized as one of the nations’ best—and where we plan to go from here.
Ava Hope Pena is a cheerful, bright 8-year-old who loves being the table captain at school. From all appearances, Ava lives a normal life. But Ava has a rare, serious kidney condition called focal segmental glomerular sclerosis (FSGS). The progressive nature of Ava’s disease – and lack of effective treatments for her – means she may someday need a kidney transplant.

Fortunately, Ava is enrolling in a new clinical trial at Levine Children’s Hospital that could change her life. 

Ten years ago, LCH couldn’t offer this potential treatment option, says Susan Massengill, MD, medical director of the nephrology department. The program, which has made tremendous strides in virtually every capacity, is hailed as one of the best in the nation by U.S. News & World Report

Over the past decade, the once-small nephrology group has transformed into a comprehensive team with nationally recognized specialists along with pediatric nurses, transplant surgeons, child life specialists, dietitians, social workers and soon, a psychologist.

The department’s research capabilities have expanded considerably to include rare kidney disease clinical trials like the one that Ava is involved in and registries to track patients with rare diseases. 

The program has a dedicated transplant team, offering the latest care options for transplant patients. In fact, LCH performs more kidney transplants than any other facility in the state.

LCH also has the only independent pediatric dialysis unit in the Carolinas. The pediatric part is significant, since children require an entirely different type of care compared to adults. Recently, the unit performed dialysis on two newborns, including one who went on to need chronic dialysis. “You have to be a really good center with a really good staff to pull that off without major complications,” says Dr. Massengill. 

The integrated department works toward a single goal – improving patients’ experience, health and quality of life. These factors are especially important because there are no cures for the majority of kidney conditions, just long-term care. What’s more, adds Dr. Massengill, “So many of our kids don’t look sick. You would never know they might sleep 15 hours a day, or need feeding tubes to maintain their nutrition, or on 15-20 medicines multiple times a day, that they’re missing school, or that their parents lost their jobs to care for their kids. Most people just don’t understand.” 

To that end, the department works to make families’ lives as close to normal as possible. The dialysis unit, for example, has a dedicated teacher and music therapy.

Along with triumphs, challenges

Perhaps just as remarkable as the growth of the nephrology department is the fact that many people don’t even realize that kidney disorders can be a problem for children and not just adults.

Thanks to the generous support of donors from the community, LCH was able to create the Pediatric Nephology Center of Excellence, designed to spread awareness and establish standards of quality and care for children with chronic kidney disease regionally and nationally. 

Dr. Massengill is optimistic about what the future holds for kidney disease treatment. “We’re working really hard to change the landscape in this community with respect to the outcomes and quality of care we give children with chronic kidney disease. It may not always result in a cure, but if it makes their lives better even for a day, even for an hour, it’s all worth it.”