His son was born with a rare disease, so this father donated a kidney. He

When Stephen Munari’s son Jaren was born, Munari knew he would one day donate an organ to help him.

The day before he was born, doctors told Jaren’s parents that their son would only have one kidney, which was “pretty small,” his mother, Donna Griebel, told CBS News.

Jaren, now 9 years old, was born with a rare congenital condition called branchio-oto-renal syndrome. According to an estimate from the National Organization for Rare Disorders, only one in 40,000 people are diagnosed with the disease, which affects the kidneys, ears and neck.

The condition of his kidneys prompted doctors to perform an emergency cesarean section. A few days after Jaren was born, they noticed two marks on his neck, telltale signs of branchio-otor-renal syndrome. After a series of genetic tests, Jaren was officially diagnosed with the disease.

Management of branchio-oto-renal syndrome and kidney diseases

Branchio-oto-renal syndrome has no cure, and because Jaren was born with an undersized kidney, the organ had to “work harder” to filter blood, regulate fluids and otherwise function, according to the Dr. Laura Malaga-Dieguez, physician. director of the Pediatric Renal Transplant Program and the Pediatric Nephrology Program at NYU Langone Hassenfeld Children’s Hospital.

Malaga-Dieguez said she and her family “always knew a transplant was on the horizon.” Jaren also underwent early intervention for his hearing loss, including hearing aid implantation, and underwent surgery to repair the gill slit fistulas on his neck that had heralded his diagnosis.

Jaren entered what is called the fourth of five stages of chronic kidney failure in 2023, Malaga-Dieguez said. The family began to think seriously about what this would entail and where the kidney would come from.

More than 25,000 kidney transplants were performed in the United States in 2022, according to the United Network for Organ Sharing. About a third of kidney transplants come from living donors, the Mayo Clinic says online, with those organs “usually” coming from someone the patient knows. Transplant surgeon Dr. Jonathan Berger, who performed Munari’s surgery, said family members are often the best option for a match. Munari and Jaren have the same blood type, meaning there was no “preformed natural immunity to his father’s body,” Berger said.

“I think (Munari) always knew it was going to be him,” Malaga-Dieguez said. “We always joked that he always said ‘it’s going to be me, it’s going to be mine’, but we don’t know until we test them.”

Griebel was not up to the task. Fortunately, Munari was. The family was on a trip to Disney World when they heard the news.

“We were in Magic Kingdom. I remember exactly where we were,” Munari said. “My transplant coordinator contacted me and said, ‘You’re a match. We’re going to do it as soon as possible.’We came home, we picked the date and the rest is history.'”

One morning, two operations

Jaren and Munari’s surgeries were scheduled for September 25, 2023. At 8 a.m., Munari underwent minimally invasive surgery, according to Berger. About an hour later, Jaren was wheeled into an operating room and Munari’s kidney was transplanted into his son’s body by another transplant surgeon. “The simple operation” was finished by 1 p.m., Berger said.

Branchio-oto-renal syndrome will no longer be a problem for Jaren — the disease will not recur in the new kidney, Malaga-Dieguez said, and his other conditions linked to the syndrome, like hearing loss, have been treated. Munari said her son is “a different person” because of the new organ.

“It’s amazing. His health is much better,” Munari said. “(Jaren) being out there and being a kid — we’ve never experienced that, ever, with him. It’s something new for us, and it’s a joy to see.”

Looking to the future

This isn’t the end of the road for Jaren. Kidney transplants from a living donor last an average of 15 years, Berger said, although aggressive treatment can extend that time, but Jaren will eventually need another transplant. He will also spend the rest of his life taking medications intended to prevent his body from rejecting the organ.

Malaga-Dieguez said pediatric transplants also bring an unexpected complication: adolescent rebellion.

“Adolescence is a struggle to get them to take their medications, to come to the clinic, to do what they’re told,” Malaga-Dieguez said. Transferring a pediatric patient to an adult nephrologist is also a difficult transition, she said.

Although Munari and Griebel are aware of the obstacles they and their son will face in the future, they are focused on the present moment as the anniversary of Jaren’s transplant approaches. The family recently celebrated Jaren’s progress with a block party, celebrating with his medical team and another family they befriended and whose child received a transplant at the same time.

“It feels like a honeymoon, where everything is going so well and he’s doing well,” Griebel said. “There’s really nothing for us to worry about at this point. We’re kind of going back to the boring part of life, which is the beautiful part. … Easy Saturday mornings, movie nights, pizza nights , Jaren being able to eat his favorite foods that he didn’t eat before – it’s just really nice.”