This father donated a kidney to his son after he was born with a rare disease – “I always knew it was me.”

When Steven Munari's son, Jalen, was born, Munari knew he would one day donate his organs to help save him.

The day before Jalen was born, doctors told his parents that their son had only one kidney and that it was a “small one,” his mother, Donna Griebel, told CBS News.

Jalen, now 9 years old, was born with a rare congenital condition called branchio-oto-renal syndrome, which is diagnosed in only 1 in 40,000 people, according to the National Institutes of Health. Estimated by the National Rare Diseases OrganizationIt affects the kidneys, ears and neck.

Due to the condition of his kidneys, doctors decided to perform an emergency Caesarean section. A few days after Jalen was born, doctors noticed two marks on his neck, a telltale sign of branchio-oto-renal syndrome. After a series of genetic tests, Jalen was officially diagnosed with the condition.

Management of Branchio-Oto-Renal Syndrome and Kidney Disease

There is no cure for branchio-oto-renal syndrome, and because Jalen was born with only one small kidney, his kidney “had to work harder” to filter blood, regulate fluids and perform other functions, said Dr. Laura Malaga Dieguez, medical director of the Pediatric Kidney Transplant Program and Pediatric Nephrology Program at NYU Langone's Hassenfeld Children's Hospital.

Malaga-Dieguez said she and her family “always knew a transplant was coming.” Hallen also received early intervention for his hearing loss, including hearing aid implants, and had cleft palate repair surgery.

Malaga-Dieguez said Haren entered stage four of five stages of chronic kidney disease in 2023. The family began thinking seriously about what that meant and where to get a kidney donation.

More than 25,000 kidney transplant surgeries were performed in the United States in 2022. Unified Network for Organ DonationAbout one-third of kidney transplants come from living donors. Mayo Clinic OnlineSuch organs “usually” come from people the patient knows. Dr. Jonathan Berger, the transplant surgeon who performed Munari's surgery, said family members are often the best choice for a compatible organ. Because Munari and Jalen have the same blood type, there is no “natural, preformed immunity to the father's body,” Berger said.

“I think (Munari) always knew he was going to be selected,” Malaga-Dieguez said. “I always joked that he said, 'I'll be selected, I'll be selected,' but you never know until you try.”

Griebel wasn't a match. Luckily, Munari was. The family received the news during a trip to Disney World.

“We were at the Magic Kingdom, I remember exactly where we were,” Munari said. “The transplant coordinator called us and said, 'You're a match. We'll do the transplant as soon as possible.' We went home, we scheduled a date, and the rest is history.”

One Morning, Two Surgeries

Jalen and Munari's surgery was scheduled for Sept. 25, 2023. At 8 a.m., Munari underwent minimally invasive surgery, Berger said. About an hour later, Jalen was rushed into the operating room, where another transplant surgeon implanted Munari's kidney into his son. The “minor surgery” was completed by 1 p.m., Berger said.

Branchio-oto-renal syndrome is no longer a problem for Haren. Málaga-Dieguez said the disease will not return with his new kidney, and other symptoms associated with the syndrome, such as hearing loss, have been treated. Munari said her son is “a different person” with his new organ.

“It's great. His health is so much better,” Munari said. “For (Jaren) to be outside and be a kid is something he's never experienced before. It's new for us and it's great to see.”

Looking to the future

This isn't the end for Jalen. A living donor kidney transplant lasts an average of 15 years, Berger said. Aggressive treatment can extend that time, but Jalen will eventually need another transplant. He'll also be on medication for the rest of his life to prevent organ rejection.

Málaga-Dieguez said another unforeseen complication of pediatric transplants is adolescent rebellion.

“It's hard to get teenagers to take their medicine, come to clinic and do what they're told,” Málaga-Diéguez said. Handing over pediatric patients to adult nephrologists is also a difficult transition, she said.

Munari and Griebel know the challenges they and their son will face in the future, but as the anniversary of Jalen's transplant approaches, they're focused on enjoying the present. The family recently celebrated Jalen's recovery with a neighborhood party, celebrating with his medical team and the families of friends who had children who had transplants around the same time.

“Everything is going well, he's doing well, and it feels like we're on honeymoon,” Griebel said. “There's really nothing to be worried about at this point. We're getting back to the boring parts of life, which is the most fun part. Laid-back Saturday mornings, movie nights, pizza nights, being able to eat Jalen's favorite foods that he wasn't able to eat before, it's just wonderful.”