Kidney Brothers Develop Bond for Life

Ryan

Danyal

What happened between two families at Stanford Medicine Children’s Health bonded them forever.

While awaiting kidney transplants for their young boys, the two families—one from Hawaii, one from California—became friends. Families often become close during the long hours of dialysis, but they don’t often hear the hopeful news that a donor kidney might be a match on the same day.

“We were at the Pediatric Dialysis Center, and Imran Ali said he got a call about a donor match for his son, Ryan,” says Katherine Kabbabe-Kherati. “The next thing I know, I got a call about my son, Danyal.”

Matching donor kidneys

There’s a lot that goes into matching donated kidneys with a recipient, so the families didn’t let themselves get too hopeful. Sometimes doctors pass up a kidney because a child is ill; sometimes the kidney ends up not being viable.

“A child’s time on the waitlist starts when they begin dialysis,” says Gerri James, manager and pre-transplant coordinator of the Pediatric Kidney Transplant program at Stanford Medicine Children’s Health. “But the waitlist takes into account a lot of things, including blood type, donor age and location, the health of a child, and timing. I always say, ‘Your child will get the kidney they are supposed to get.’”

Two boys, two kidneys, one possible donor

Jan. 28, 2021, is a date that’s etched in the families’ minds forever. It’s the day that their boys received lifesaving kidneys.

“I was in the hallway of the intensive care unit (ICU) while Ryan was recovering from kidney transplant surgery, and I saw Katherine,” says Ali. “She ran up to me and said, ‘Ryan got a kidney? So did Danyal!’ That’s when I suspected that our boys’ kidneys might be from the same donor.

Hearing the news on the same day—and guessing it was the same donor—connected the two families forever.

“When I saw Imran in the ICU that day, I ran to him and we hugged. It was such a special moment, and in that moment the boys became brothers,” Kabbabe-Kherati adds.

Today, they refer to their boys as “kidney brothers.”

Coping with kidney transplant

The boys needed kidneys for different reasons. Ryan has a rare genetic disorder called Senior Løken syndrome, which causes problems with kidneys and eyes over time. Ryan, age 5, and his older brother Rasheed, age 16, were born with the syndrome—a 1 in 1 million chance. Both are blind, and both needed a kidney transplant as preschoolers. Today, Rasheed is a junior in high school who enjoys computers, and Ryan is a rowdy kindergartener.

“With Rasheed, everything was terrifying as a parent. You have so many questions, and there’s so many unknowns. With Ryan, it felt like second nature,” Ali says, who shares his experience with other families at Stanford Medicine Children’s Health who are facing kidney transplant.

Kabbabe-Kherati appreciated Ali’s guidance and advice. She had to make the trip alone to California with baby Danyal, living an entire year at the Ronald McDonald House at Stanford. Having a friend who was going through the same thing, and who knew the ropes, meant a lot to her.

Danyal, age 2, was diagnosed with bilateral kidney dysplasia at birth, a condition where the kidneys do not form properly in the womb. He spent most of his first 8 months of life in his local hospital’s neonatal intensive care unit in Hawaii. Due to problems with dialysis, and the fact that many hospitals are not equipped to provide dialysis to babies, Danyal was transferred to Stanford Medicine Children’s Health.

“Danyal is strong and very positive, like his mom. He came to us with catheter problems, which can be painful, but he would just giggle through the pain,” says Amy Gallo, MD, surgical director of pediatric kidney transplant. “I saw him recently for a follow-up visit. Sometimes you worry that babies with kidney disease won’t develop properly, but he’s doing great.”

For Kabbabe-Kherati, her son’s kidney transplant surgery was the longest five hours of her life. But it went smoothly.

“Dr. Gallo and the whole transplant team are amazing,” she says. “I knew Danyal was in good hands because Dr. Gallo did his corrective surgery for the catheter when we first arrived, so I had confidence and trust going into his transplant.”

Dr. Gallo also performed Ryan’s kidney transplant surgery that same day, and she had provided follow-up care to Rasheed years earlier. She’s grateful to kidney donors and to the Ali family for entrusting the hospital with the care of their boys.

“When we have families like the Alis who trust in us, we get to learn about rare disorders, like Senior Løken syndrome. It makes us better doctors and empowers us to deliver the best care possible,” she adds. “Ryan was so brave. It was very challenging for him to be blind and have to use different senses to figure out what people were doing.”

Dr. Gallo says the real goal is not just a successful transplant, but one that will allow children to live healthy, happy lives. Because Stanford Medicine Children’s Health follows kids who receive kidney transplants for life, caregivers often think of them as family.

Creating connections during dialysis

Children with end-stage kidney disease need dialysis to help their bodies function while they await a donor match. The healthier they are going into transplant, the healthier they are coming out. Effective dialysis is a key reason for the Kidney Transplant program’s impressive outcomes at Stanford Medicine Children’s Health. Children may need dialysis three to four times a week for three to four hours each day.

“A strength of our dialysis center is that we have a small community of highly specialized nurses who provide consistent care. Families often see the same nurses every time they come in, which brings comfort,” says Cynthia Wong, MD, medical director of Pediatric Dialysis. “Our dialysis team also includes dialysis nurse coordinators, technicians, psychologists, social workers, dietitians, and a school teacher who care for the whole child and family while they receive dialysis.”

Both Danyal and Ryan had favorite nurses in dialysis. Ali would tell Ryan that it was time to go see nurse Paul and Ryan would happily oblige, and Danyal adored Veronica, who he thought of as his grandma.

“We often see families form special bonds in dialysis, because kidney disease is such a challenging and difficult diagnoses to cope with alone,” says Mayna Woo, RN, patient care manager. “But this was the first time I’ve seen two families that were friends get the news that their children were getting a kidney on the same day!”

The two families text and call to stay in touch, and they plan to see each other in person after the pandemic ends. Rasheed will graduate from high school next year, and Imran says it’s the perfect reason to plan a family trip to Hawaii to see Katherine and Danyal.

Becoming a donor

“Every time I look at Danyal, I am so grateful to the organ donor,” Kabbabe-Kherati says. “My child is fine because of a family’s precious gift, yet that gift came because they lost someone they loved. It’s very emotional for me to think about.”

Because of the pandemic, Stanford Medicine Children’s Health is experiencing a shortage of donor organs. To learn more about becoming a living or deceased kidney donor, visit Kidney Transplant FAQ’s for donors. By registering to be an organ donor, you will be saving lives. Remember, adult-sized kidneys can be used in children.

“Donors truly give the gift of life to families like these,” James says. “Right now, we have dozens of children waiting for kidneys.”