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 just the 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. Just one in 40,000 people are diagnosed with the condition, according to an estimate from the National Organization for Rare Disorders, affects the kidneys, the ears and the neck.
The state of his kidneys spurred doctors to do 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 condition.
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Managing branchio-oto-renal syndrome and kidney disease
Branchio-oto-renal syndrome has no cure, and because Jaren was born with one, undersized kidney, the organ had to “work harder” to filter blood, regulate fluids and otherwise function, according to Dr. Laura Malaga-Dieguez, the 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 the family had “always known that transplant was on the horizon.” Jaren also underwent early intervention for his hearing loss, including having hearing aids implanted, and had a cleft palate repair surgery.
Jaren entered what’s called the fourth of five stages of chronic kidney disease in 2023, Malaga-Dieguez said. The family began looking seriously at what that would entail — and where the kidney would come from.
Over 25,000 kidney transplants were done 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 that family members are often the best option for a match. Munari and Jaren have the same blood type, which meant there was no “natural, preformed immunity against his dad’s body,” Berger said.
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“I think (Munari) always knew it was going to be him,” said Malaga-Dieguez. “We always joked that he always said ‘It’s going to be me, it’s going to me,’ but we don’t know until we actually test them.”
Griebel was not a match. Luckily, Munari was. The family was on a trip to Disney World when they received the news.
“We were in Magic Kingdom. I remember exactly where we were,” said Munari. “My transplant coordinator reached out and was like ‘You’re a match. We’re going to do this as soon as possible.’ We got home, we picked the date and the rest is history.’”
One morning, two surgeries
Jaren and Munari’s surgeries were scheduled for Sept. 25, 2023. At 8 a.m., Munari underwent a 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 “straightforward operation” was completely done by 1 p.m., Berger said.
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Branchio-oto-renal syndrome will no longer be a problem for Jaren — the condition will not recur in the new kidney, Malaga-Dieguez said, and his other conditions related to the syndrome, like hearing loss, have been treated. Munari said his son is “a different person” thanks to the new organ.
“It’s amazing. His health is a lot better,” said Munari. “(Jaren) being outside and being a kid — we haven’t experienced that, never, with him. This is something new for us, and it’s a joy to see.”
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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, though aggressive treatment can extend that time, but Jaren will eventually need another transplant. He will also spend the rest of his life on medications meant to stop his body from rejecting the organ.
Malaga-Dieguez said that pediatric transplants also have an unexpected complication: teenage rebellion.
Hassenfeld Children’s Hospital at NYU Langone/Joe Carrotta
“The teenage years are a struggle in terms of having them take their meds, come to the clinic, do what they’re told,” Malaga-Dieguez said. Transferring a pediatric patient to an adult nephrologist is also a difficult transition, she said.
While Munari and Griebel are aware of the hurdles they and their son will face in the future, they’re focusing 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 child received a transplant at the same time.
“It just feels like a honeymoon stage, where everything is so smooth and he’s doing well,” said Griebel. “There’s really nothing at this point we have to worry about. We’re kind of getting back into the boring part of life, which is the greatest part. … Easy Saturday mornings, movie nights, pizza nights, Jaren getting to eat his favorite foods that he wasn’t eating before — it’s just really nice.”
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