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

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.

Content Continues Below

“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.

“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.

9 Investigates: Saving organs to save lives