Elowen Smith

News, Child Health | 3 months ago

Making It Matter: Elowen’s Journey With Chronic Kidney Disease

Elowen has chronic kidney disease and will need a transplant sooner than later. But through it all, she’s finding ways to give back and help other kids just like her.

Ten-year-old Elowen Smith loves being outside and staying up late and playing with her cat named Dave. She’s self-taught in one-handed cartwheels and sings at the top of her lungs when she thinks no one’s watching.

And even if the ocean is icy cold, she doesn’t enter the frigid water on tiptoes – she leaps in all at once.

Five years ago, Elowen’s parents, Kyle and Jen, sat in Atrium Health Levine Children’s Nephrology clinic, digesting the news. They’d just learned their 5-year-old daughter had Stage 3 kidney disease, on the cusp of Stage 4. “I think we were hoping this was just an acute kidney disease that would go away. We were thinking, ‘This isn’t us,’” Kyle recalls. But as they watched other families enter the office and met with Elowen’s nephrologist, it hit them: “This is us.”

At that moment, the Smiths made a decision: They wouldn’t let Elowen’s diagnosis define her – they’d make it matter.

Tuning up for transplant

Although Elowen was born with chronic kidney disease, the symptoms didn’t become evident until she was 5 years old. It’s what Susan Massengill, MD, calls “the silent nature” of chronic kidney disease. Dr. Massengill is the medical director of nephrology at Atrium Health Levine Children’s and one of Elowen’s kidney specialists.

For some children, the first sign of chronic kidney disease is as covert as elevated blood pressure. For Elowen, it was a urinary tract infection that wouldn’t go away, even with antibiotics. Her pediatric provider – Beth Haynes, NP, at Atrium Health Levine Children’s Providence Pediatrics – called in blood work, which revealed kidney numbers so elevated, Elowen was immediately admitted to Atrium Health’s Levine Children’s Hospital.

Levine Children’s Hospital is recognized by U.S. News & World Report among the best in the nation for pediatric nephrology care. It’s home to the Pediatric Nephrology Center of Excellence, which is dedicated to research, education and continually improving the patient experience. Not only is Levine Children’s Hospital a premier center for kidney care in the Southeast, but it was also the best place for Elowen. “When we moved to Charlotte, we moved here just to get out of the snow in Minnesota,” says Kyle. “Call it what you will, but now I believe we’re here because it’s where Elowen needed to be.”

After a four-day hospitalization and follow-up visit with the nephrology team, Elowen’s diagnosis came into focus. She has a congenital anomaly of the kidneys and urinary tract (CAKUT), a disease in which the kidneys and bladder don’t form properly in the womb. For Elowen, this means she only has one functioning kidney – her left kidney – but it’s still smaller than average and doesn’t filter as it should. She also struggles to empty her bladder and experiences vesicoureteral reflux (VUR) on her right side, where urine flows backward from the bladder to the kidneys instead of from the kidneys to the bladder.

While medication helps keep her kidneys in check for now, her team of nephrologists and urologists is getting Elowen’s body – and bladder – ready for the next step: a kidney transplant.

“To be successful, a kidney transplant needs an environment free of any obstruction, and we’re working with her urologists to get her tuned up for transplant,” explains Dr. Massengill. This ‘tune-up’ will include a surgery to modify Elowen’s bladder to correct the flow of urine and help her empty her bladder completely. Elowen has already undergone one surgery to improve her bladder function and will eventually need her underdeveloped right kidney removed as well.

Though there are still steps to take before Elowen can get her new kidney, the Smiths are ready. In fact, they’ve already found two donor matches: Mom and Dad.

K Is For Kidneys

Elowen is the youngest of three girls. Shortly after her diagnosis, she and her big sisters had an idea: What if they hosted a backyard talent show to raise money for other kids with kidney disease?

They made signs and marched up and down the block, inviting one and all to come to their show. On the day of the event, friends, neighbors and Elowen’s teachers were all in attendance. With the $2,000 they raised, the Smith sisters bought toys at SouthPark Mall, which they hand-delivered to Dr. Massengill for kidney patients at Atrium Health Levine Children’s.

The show was such a hit, the Smiths decided to do it again the following year, and the year after that. Today, they run a nonprofit called K Is For Kidneys and have raised over $30,000 for the Pediatric Nephrology Center of Excellence. They help families across the Carolinas navigate travel expenses, lodging and food, while facing chronic kidney disease. “One of our driving forces,” says Jen, “is for people to understand kidney disease and rally behind that cause.”

In addition to K Is For Kidneys, Elowen participates in an advisory group at Levine Children’s Hospital, where patients and families offer feedback and suggestions for improving the patient experience. “It is amazing to see Elowen voice her opinions in a group of older adolescents, parents and caregivers with such confidence. Her attitude is in part the product of her parents’ incredible positive attitude regarding her diagnosis and treatment. They’ve embraced her renal disease in a very healthy way, and this has helped in her journey,” says Dr. Massengill.

Five years ago, Elowen received a life-changing diagnosis. But she and her family are making it clear that life-changing is not the same as life-defining. And no matter what comes Elowen’s way, she’s going to keep making it matter.