By: Christina Echegaray for VUMC
Most graduations feature caps, gowns and a walk across the stage but 19-year-old Briceton Latta’s looked very different.
Instead, Briceton walked the halls of the cystic fibrosis clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt, greeted by cheers, purple pom-poms and the care team that has been by his side since birth. It marked his final visit to pediatric care and the transition into adult cystic fibrosis treatment.
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Briceton Latta, 19, didn’t don a cap and gown or march to the familiar tune of “Pomp and Circumstance” at his recent graduation.
Instead, he walked through the hallways of the cystic fibrosis clinic at Monroe Carell Jr. Children’s Hospital at Vanderbilt, greeted by cheers and purple pom-poms. It was a moment of celebration and reflection: his final appointment at the pediatric CF clinic.
An optimistic and smiling Latta, who has managed the complexities of cystic fibrosis his entire life, had just graduated from the pediatric clinic and would be transitioning to the adult cystic fibrosis clinic at Vanderbilt University Medical Center.
“I have a lot of memories here,” Latta said, referring to the Monroe Carell team. “I mean, they’ve been like family. I can act like myself around them. And (health-wise) I feel great.”
He feels so great, says his mom, Sherry, that “he doesn’t feel like he has CF. But I remind him; he has to keep doing his treatments and taking his medications. He’s on about 15 medications.”
Cystic fibrosis is a genetic disorder that affects a salt channel, causing secretions to become thick and sticky and plug up tubes, ducts and passageways in the body, especially in the lungs and pancreas. CF can cause severe damage to the lungs, digestive system and other organs in the body.
While there is no cure, people with CF can manage their condition through a rigorous routine of airway clearance, medications, fitness and nutrition.
Life expectancy rises as cystic fibrosis care advances
Latta’s transition to the adult clinic is a victory, not just for him, but for the broader CF community.
Once considered primarily a childhood disease, groundbreaking medical advancements in therapies and treatment regimens have increased life expectancy for people living with CF.
When Latta was born in 2006, the average life expectancy of a patient with CF was 37. Today, that expectancy is 65 and beyond.
He was born at a time when many states were just beginning to add cystic fibrosis variants to the newborn screening panel. Latta, who lives in Paducah, was one of Kentucky’s first newborns identified to have CF through the blood test and then referred to Monroe Carell.
Monroe Carell and VUMC share the same campus and a comprehensive cache of experts, allowing the pediatric and adult care teams to coordinate a smooth handoff. Both the pediatric and adult CF clinics are accredited by the Cystic Fibrosis Foundation for excellence in care, research and innovation.
“We’re definitely seeing a new age of CF medicine. That we’re talking about needing elderly care is kind of mind-blowing when you’re thinking about cystic fibrosis,” said Rebekah Brown, MD, a pediatric pulmonologist and director of the Pediatric Cystic Fibrosis Program. “The vast majority of their life is now going to be on the adult side, so making sure that the transition process is smooth — that we provide patients with the resources and the support they need to become functioning adults with a chronic disease is incredibly important.”
A ceremony to honor strength and perseverance
The shift out of the pediatric clinic typically aligns with high school graduation and is marked with hugs and farewells.
But Stefanie Rushing, MSN, RN, coordinator for the Pediatric Cystic Fibrosis Program, and Natasha Vanderbilt, RT, envisioned something more meaningful. Many patients and their families have been with the CF team since birth, celebrating life milestones, ups and downs, birthdays, holidays and more along the way.
“Many of us have been here so long; it’s like watching one of your own children graduate,” Rushing said. “We’ve seen them at least every three months in clinic for their entire lives.”
They launched a formal graduation ceremony in the spring. Each graduate receives a framed refrain that gets read aloud. The graduate rings a purple bell — the color of CF awareness — after each line.
It reads: “Hope exists so that one day CF will stand for ‘Cure Found.’ Perseverance, because living with CF requires daily perseverance and shows commitment and strength that’s needed to navigate CF. Resilience, for the challenges and setbacks you experience. You have the strength and the ability to bounce back from adversity. Your journey continues…”
There are few, if any, dry eyes at the end of the ceremony.
“We wanted to find a way to mark that there is so much that has transpired since they were born. They did it; they’ve made it; and their journey is continuing,” Rushing said. “From the first patient’s graduation through Briceton’s, we’ve seen how touching this moment is. It’s special, and it’s a major milestone. They’ve done something great by getting to this point.”
So far, 11 patients have “graduated” into the adult clinic. Stacy McIntyre, MD, who is trained in both pediatric and adult pulmonology, serves as the liaison to ensure a smooth transition.
“It takes conscious effort and coordination between teams to make sure patients and providers have the necessary tools for a successful transition,” McIntyre said. “We are lucky that both adult and pediatric CF programs are so invested in this effort; I think it makes a huge difference for these patients.”
Latta’s mom got emotional reflecting on the 19-year journey through the CF clinic and hospital stays at Monroe Carell.
“We’ve pretty much done it all here — Halloween, Christmas, Thanksgiving — we’ve always been in the hospital for a holiday. It’s just felt like a second home, a second family,” Sherry Latta said.
Latta chimed in to assure his team it was the start of the next chapter in his journey, not goodbye.
“It’s just a 10-minute walk across the (Vanderbilt) plaza to Monroe Carell. I’ll be back to visit,” he promised his teary CF team.
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