Mylah’s Story: Saved by Timely Treatment for Rare Kidney Condition

March 04, 2021

Tanika and Michael describe their 5-year-old daughter Mylah as a naturally outgoing, funny and smart child who’s a “total daddy’s girl.” So when Mylah began to withdraw socially in the spring of 2020, her parents knew something was wrong. A doctor at their local hospital thought Mylah had a urinary tract infection and prescribed antibiotics, but within a week, she showed no sign of improvement.

“The medicine wasn’t working, and her urine was getting darker and darker,” Tanika said. “She still wasn’t herself and she wouldn’t talk to us.”

Increasingly worried, Tanika took her daughter to the emergency room.

“We didn’t even finish the check-in process at the hospital before a doctor saw us and said, ‘She doesn’t look good,’ and brought her into a room. As soon as we got into the room, she started seizing.”

Amid the commotion, doctors told Tanika that both of Mylah’s kidneys had failed. She had to be transported by helicopter to Lurie Children’s, where a team of pediatric experts was ready to care for her.

A Pediatric Nephrologist Provides Answers

At Lurie Children’s Lefkofsky Pediatric Intensive Care Unit, Tanika felt like Mylah was in great hands from the beginning. The team of critical care experts stabilized Mylah with oxygen, fluids, dialysis and a blood transfusion to prevent another seizure. Doctors also ran a battery of tests to determine what had caused Mylah’s kidneys to fail.

Mylah was diagnosed with an extremely rare condition known as atypical hemolytic uremic syndrome (aHUS). Her genetic condition caused the small blood vessels in her body to get swollen and damaged, leading to kidney failure that doctors at Lurie Children’s treated with dialysis. The condition also caused high blood pressure for Mylah, for which she began multiple medications. If she had not been treated, she could have even died, according to Dr. Priya Verghese, the Division Head of Nephrology at Lurie Children’s.

Dr. Verghese cared for Mylah during her inpatient stay, and met with parents Tanika and Michael regularly to discuss aHUS, as well as the treatment protocol that would keep her healthy once she returned home with her family. In addition, Dr. Verghese and her team worked with Mylah to help teach her how to take pills, encouraged her to eat and build up her strength and empowered Mylah to be at the center of all her medical care discussions despite her young age.

“We learned how to do manual blood pressure checks and how to monitor her sodium intake,” Michael said. “We learned the importance of watching her diet. Her team also showed us ways to help us get Mylah to take her medicine to keep her healthy.”

About once a month, they travel to Lurie Children’s to meet with Dr. Verghese. Although Mylah is not out of the woods, since returning home, her health has been noticeably improved, Tanika and Michael said. Prior to her diagnosis, Mylah was susceptible to upper respiratory infections and viruses, which baffled her doctors. Now that her kidneys are in better health, her immune system is better able to fight off infections. She gets an infusion through an IV every month to prevent a flare of her atypical HUS, and her medical team is grateful that she has remained in remission with their treatment plan.

Throughout her medical journey, Mylah stays actively involved in her own care, learning as much as she can about her condition. “When she was in the hospital, she was so into what the doctors and nurses were doing, and she wanted to know what was going on,” Tanika said. “Now, she knows what dialysis is and talks about her kidneys and her sodium intake.”

Dr. Verghese enjoys chatting with Mylah and is trying to convince Mylah to grow up and get into politics so she can vote her in as president one day; but Mylah insists she wants to be a kidney doctor for kids.

About Lurie Children’s Division of Nephrology

The Division of Nephrology (Kidney Disease) at Lurie Children’s is ranked 12th in the nation by U.S. News & World Report for pediatric kidney disorders. We have the region’s largest pediatric kidney diseases (pediatric nephrology) team, caring for more than 4,000 infants, children and adolescents each year. Our division offers a full scope of care, including dialysis and kidney transplantation for children with kidney failure. Children can also receive multi-organ transplantation, such as liver-kidney transplantation for oxalosis or polycystic kidney disease. We are a world-renowned program, and our outcomes rank among the top centers in the U.S. for both transplant and dialysis. Our Pediatric Kidney Transplantation Program continues to rank among the nation’s ten best pediatric programs and is the largest of its kind in Illinois.

Learn more about the Division of Nephrology (Kidney Disease)