Born with posterior urethral valve and kidney failure, Rayaan has needed urologic and kidney care all his life.

News, Child Health | 3 months ago

Beating the Odds: Helping Rayaan Thrive With a Urological Condition

Born with posterior urethral valve and kidney failure, Rayaan has needed urologic and kidney care all his life. Despite the many challenges of his condition, Rayaan faces each one with a resilient, upbeat attitude.

There are over a thousand miles between the Queen City and the Mile High City. But Uzma Khan says it was a “serendipitous road” that led her family here.

Back in 2015, as Uzma and her husband, Babar, prepared to move their family from Denver, CO, to Charlotte, NC, finding the best pediatric care was a top priority. Their son Rayaan was born with a rare urologic and kidney disease and has needed a team of specialists to keep his condition under control.

Fortunately, Rayaan’s doctors in Denver knew just who should continue his care in Charlotte: Atrium Health Levine Children’s. Levine Children’s Hospital is the only children’s hospital in the Charlotte region recognized by U.S. News & World Report, and our pediatric urology and kidney care currently rank among the best in the nation.

“While Levine Children’s Hospital is large by national standards, we continue to have a family feel,” says Alison Keenan, MD, a pediatric urologist at Atrium Health Levine Children’s – and one of the many doctors who welcomed Rayaan with open arms.

Beating the odds and thriving

Rayaan was diagnosed with posterior urethral valve (PUV) during an anatomy ultrasound before he was born. PUV is an abnormality of the urethra which can affect the bladder and kidneys and, in Rayaan’s case, cause kidney failure at birth.

“I’d been in the la-la land of first pregnancy. The diagnosis knocked the wind out of me,” Uzma recalls. But she and Babar quickly accepted this as their “new normal” and changed gears, going from filling out baby books to preparing for a newborn with complex health needs.

In his first years of life, Rayaan underwent multiple surgeries to improve bladder function and take some of the pressure off his kidneys. By the time he was 2 and moving to Charlotte, his bladder and kidney function were mostly stabilized. But like many children with PUV, stabilized doesn’t mean cured. “Over time, his bladder and both his kidneys have stopped working as well as they once did – but he continues to beat the odds and thrive,” says Dr. Keenan.

Today, at 10 years old, Rayaan’s chronic kidney disease is progressing to Stage 5, which ultimately means he’ll need a kidney transplant. But for now, with most of his urologic issues under control, his condition is kept in check with frequent testing and medication – as well as overnight catheterization. “He’s becoming responsible and positively embraces every challenge thrown at him. He’s really amazing,” says Uzma.

Uzma also credits Rayaan’s care team for ensuring the treatments fit her son’s life, not the other way around. “Dr. Keenan understands this is real life. She makes sure the treatments fit his quality of life, and at the end of the day, we’re excelling at that,” she says.

Despite the many challenges he’s faced, Rayaan has an optimistic outlook and focuses on the things he loves – like cooking. No matter what his parents are making, he wants to know, What seasoning is that? What did you put in there? And while he might not know all the ingredients in his mom’s curry just yet, it’s safe to say Rayaan has already discovered the secret ingredient to life is how you approach it.

Six years ago, the Khans arrived in Charlotte as new neighbors. Today, they feel right at home, knowing their son is getting the care he deserves, from doctors who are like family. “As long as we’re in Charlotte,” says Uzma, “Levine Children’s Hospital is the place for us.”