His son was born with a rare condition, so this father donated a kidney. He “always knew it was going to be him.”

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

The day before his birth, doctors told Jaren's parents that their son would have only one kidney, which was “on the small side,” his mother, Donna Griebel, told CBS News.

Jaren, now 9, was born with a rare congenital disorder called branchio-oto-renal syndrome. Only one in 40,000 people is diagnosed with the disease, according to an estimate by the National Organization for Rare Disorders, which affects the kidneys, ears and neck.

The state of her kidneys prompted doctors to perform an emergency C-section. A few days after Jaren was born, they noticed two marks on his neck—the telltale signs of branchio-oto-renal syndrome. After a round of genetic testing, Jaren was formally diagnosed with the disease.

Management of branchio-oto-renal syndrome and kidney disease

Otorhinolaryngitis 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 doctor Laura Malaga-Dieguez, doctor. director of the Pediatric Kidney Transplant Program and the Pediatric Nephrology Program at Hassenfeld Children's Hospital at NYU Langone.

Málaga-Dieguez said she and the family had “always known a transplant was on the horizon.” Jaren also underwent early intervention for his hearing loss, including hearing aids, and cleft palate repair surgery.

Jaren entered what is called the fourth of five stages of chronic kidney disease in 2023, Malaga-Dieguez said. The family began to look seriously at 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, according to the Mayo Clinic 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, which means there was no “natural, preformed immunity against their father's body,” Berger said.

“I think (Munari) always knew it was going to be him,” Malaga-Dieguez said. “We always joked that it was always, 'It'll be me, it'll be fine,' but we don't know until we put them to the test.”

Griebel was no match. Luckily, Munari was. The family was on a trip to Disney World when they got the news.

“We were at Magic Kingdom. I remember exactly where we were,” Munari said. “My transplant coordinator got in touch and said, 'You're a match.' We'll do it as soon as possible.' We got home, picked the date and the rest is history.”

One morning, two interventions

Jaren and Munari's surgeries were scheduled for Sept. 25, 2023. At 8 a.m., Munari underwent minimally invasive surgery, according to Berger. About an hour later, Jaren was taken to an operating room and Munari's kidney was transplanted into his son's body by another transplant surgeon. The “simple operation” was completely done 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 related to the syndrome, such as hearing loss, have been treated Munari said her son is “a different person” thanks to the new organ.

“It's amazing. His health is so much better,” Munari said. “(Jaren) being out there and being a kid, we haven't experienced that, ever, with him. That's something new for us, and it's a joy to see him.”

Looking to the future

It's not 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 on medication aimed at preventing his body from rejecting the organ.

Málaga-Dieguez said that pediatric transplants also have an unexpected complication: teenage rebellion.

“Adolescence is a struggle in terms of taking their medication, coming to the clinic, doing what they're told,” Malaga-Dieguez said. Transferring a pediatric patient to an adult nephrologist is also a difficult transition, he said.

While Munari and Griebel are aware of the obstacles they and their son will face in the future, they are focused on enjoying the present 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 whose son received a transplant at the same time.

“It's like a honeymoon stage, where everything is so smooth and he's fine,” Griebel said. “Right now we don't have to worry about anything. We're getting back to the boring part of life, which is the biggest part… Easy Saturday mornings, movie nights, pizza nights, Jaren to eat. his favorite foods that I didn't eat before, it's really nice.”