👨👦 A Father’s Intuition
When Stephen Munari’s son, Jaren, was born, he instinctively knew that one day he would donate an organ to help him.
🩺 Early Diagnosis
The day before Jaren’s birth, doctors informed his 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, affecting just one in 40,000 people, impacting the kidneys, ears, and neck.
🏥 Managing the Condition
Branchio-oto-renal syndrome has no cure. Since Jaren was born with an undersized kidney, it had to work harder to filter blood and regulate fluids, according to Dr. Laura Malaga-Dieguez, the medical director of the Pediatric Kidney Transplant Program at NYU Langone’s Hassenfeld Children’s Hospital. From early on, it was clear that a transplant was inevitable. Jaren underwent early intervention for hearing loss, including hearing aids, and surgery to repair branchial cleft fistulas on his neck.
🔬 Preparing for Transplant
In 2023, Jaren entered the fourth stage of chronic kidney disease, prompting the family to seriously consider a transplant. With over 25,000 kidney transplants performed in the U.S. in 2022, about a third come from living donors, often family members. Transplant surgeon Dr. Jonathan Berger, who performed Munari’s surgery, explained that family members are typically the best match. Munari and Jaren shared the same blood type, making Munari a suitable donor.
🏰 A Magical Match
Munari always felt he would be the donor. The family was at Disney World’s Magic Kingdom when they received the news of the match. “My transplant coordinator reached out and said, ‘You’re a match. We’re going to do this as soon as possible.’ We got home, picked the date, and the rest is history,” Munari recalled.
⚕️ Surgery Day
On September 25, 2023, Munari underwent minimally invasive surgery at 8 a.m. An hour later, Jaren was taken into surgery to receive his father’s kidney. By 1 p.m., the “straightforward operation” was complete. The new kidney meant that branchio-oto-renal syndrome would no longer be an issue for Jaren.
🌟 New Lease on Life
Munari noticed a significant improvement in Jaren’s health. “His health is a lot better. Jaren being outside and being a kid — we’ve never experienced that with him. It’s a joy to see.”
📅 Future Challenges
While the transplant has given Jaren a new lease on life, it’s not the end of the road. Kidney transplants from living donors last an average of 15 years, so Jaren will eventually need another transplant. He will also remain on medications to prevent organ rejection. Teenage years could bring challenges in ensuring Jaren adheres to his medical regimen.
🎉 Celebrating Milestones
The family recently celebrated Jaren’s progress with a block party, sharing their joy with his medical team and another family 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. “We’re 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 — it’s just really nice.”
Jaren’s journey showcases the incredible impact of organ donation and the hope it brings to families facing rare and challenging health conditions.
