4-year-old girl gets new kidney after diagnosed with rare disorder

CHARLOTTE — Four-year-old Shylah has a rare disease that often left her in serious pain and in need of a new kidney. After two years on a waiting list, she now has one.

“I was scared,” her mother, Shannon Talbert, told Channel 9 reporter DaShawn Brown. “I was terrified. I’m not going to lie. I couldn’t show my daughter that because I had to let her know I was being strong for her. But yeah, I was just shocked and just scared.”

Shylah was almost 9-months old when her mom noticed something wasn’t right.

“She was swelling up around her eyes and around her feet and hands,” Talbert said. “She was irritable. Crying a lot. The next day, I took her to the hospital.”

Doctors at the Levine Children’s Hospital determined Shylah was suffering from kidney damage, which resulted in a condition called nephrotic syndrome.

The medical director of pediatric nephrology, Dr. Susan Massengill, described the disorder.

[Atrium Health Levine Children’s Hospital Pediatric Transplant Services]

“Each kidney has about 1 million filters in it, and those filters become very leaky,” Massengill said. “So, similar to what you would see with a leaky car filter. Unfortunately, we try different types of therapy, but she didn’t respond to those. It went on to develop in-stage kidney disease requiring dialysis. And that in a toddler, let me tell you, it’s not an easy feat for anybody.”

Shyla went in for treatment four days a week.

Doctors knew that in the long term that the toddler would need a new kidney. Last month, she got one.

“She’s done a total 360,” Talbert said. “She is more active. She plays more. She still has her little sassy attitude. I don’t think that’s going anywhere.”

Shylah will have a lifetime of medication, because she will always be a chronic kidney disease patient, Massengill said. But, she will also have excellent functionality with her transplant.