When Christina Huff answered her phone one evening in early May, she figured it was an automated appointment reminder for one of her children.
It wasn’t. Huff wasn’t prepared for the information she received.
“As soon as I answered, I heard, ‘We have a liver and pancreas for Jordyn,’ recalled Huff, who admits that the call sparked a wave of anxiety, fear and urgency.
Jordyn Williams, 15, was born with cystic fibrosis (CF), a chronic, inherited disease that damages the lungs, other organs and the digestive tract, which includes the pancreas and liver.
At 11 years old, she was diagnosed with CF-related diabetes, requiring an insulin regime.
In 2022 the teen was treated for thyroid cancer. Her liver function took a hit, which also exacerbated her CF.
Over the course of one year, Jordyn was in and out of the hospital for two-week stints for repeated lung infections, a common occurrence for CF patients due to the thick, sticky mucus characteristic of the disease that clogs the airways where bacteria colonize, causing complications.
“I knew since birth that she would need a transplant,” said Huff. “When everything was stable, it was very back of mind. But even once she was listed, there were several setbacks, which put everything on hold. We really didn’t think it would come so soon. We didn’t even have things packed!”
On May 2, Jordyn became the first patient to receive a pancreas and liver transplant at Monroe Carell, which is among an elite group of pediatric hospitals offering transplantations for multiple organs.
The milestone, dual organ transplant, opens the door for more pediatric patients to receive lifesaving care and bolsters the options for those with complex medical needs to get the best chance of a normal life.
“Our highly experienced teams will continue to strive to be leaders in organ transplantation all while broadening the access to care for our region,” said Saeed Mohammad, MD, associate professor of Pediatrics and director of the Pediatric Solid Organ Transplant Center at Monroe Carell. “As a growing program experiencing increased patient volumes, we plan to expand the innovative services we provide to children with end-stage organ disease treated with solid-organ transplantation.”
Mohammad points to the expertise of his colleagues treating adult patients in the Vanderbilt Transplant Center (VTC), one of the largest and most experienced centers in the Southeast.
“We have a deep bench of expertise and a robust relationship within VTC and work very closely with our adult experts while developing our comprehensive pediatric-focused program.”
It is that expertise in novel therapies that Huff found most comforting.
“When they first brought it up, I really had to think about whether I wanted her to be ‘the first,’” said Huff. “It was really scary. But we talked about all the benefits and had a good understanding. I was confident in all the doctors on her medical team. We have been with them her entire life and that makes a huge difference.”
Today, Jordyn is recovering at home and feeling better every day. She continues her routine breathing treatments and vitamins for CF but no longer requires insulin nor pancreatic enzymes for pancreatic insufficiency.
“That’s a big win,” said Huff. “I can tell that she is feeling better and that there is a difference since the transplant. My biggest clue? She has more energy and wants me to take her out more. Before, she didn’t want to go anywhere and would stay in her room.”
For Huff, who is incredibly grateful that her daughter will have a better quality of life, she recognizes it came at a heart-wrenching cost to another family.
“It makes me emotional to think about it,” said Huff, choking up. “Probably the biggest thing outside of being grateful for the transplant itself — is that there are people who are organ donors.
“None of this would be possible without those people. It’s hard to compartmentalize that someone’s loss became our great gain.”
