Six-year-old Graham is a bundle of energy, happily enjoying beach time while on vacation or cheering at a St. Louis City SC game with his parents.
“He just loves sports,” said his mother, Tori. “Soccer, mini-golf, bowling, running; he loves it all, especially soccer. He loves being a play-by-play sports commentator for St. Louis City SC from the stands or while watching television!”
The O’Fallon, IL, youngster has a huge smile that lights up a room. If you were just watching him run around, you’d never know he had a heart transplant when he was just three years old. “It was a really tough time for a while,” recalled Tori. “But the team at Cardinal Glennon really helped us through it all.”
Diagnosis and treatment
Graham was two years old when he became ill while on a family hiking trip to West Virginia. As he struggled to breathe and complained about a stomach-ache, Tori and her husband, Zach, cut short their vacation and came home. “At first I thought it was RSV because it seemed to be everywhere that summer,” said Tori. “But he didn’t get better.”
They took Graham to an urgent care center near their home and an X-ray soon revealed that the youngster had an enlarged heart. He was rapidly sent to HSHS St. Elizabeth’s Hospital in O’Fallon, where doctors consulted with specialists at SSM Health Cardinal Glennon Children’s Hospital. They recommend that Graham be brought to the pediatric hospital as soon as possible. Here, in the early morning hours, the family was told that Graham was in heart failure, diagnosed with severe dilated cardiomyopathy. “It was a complete shock to us,” said Tori. “He was in the hospital for six weeks while he received IV (intravenous) medicines to improve his heart function.”
Setback and ECMO support
Eventually discharged on oral medications, Graham seemed to thrive at home for months. But on a family trip to Walt Disney World® in Florida in June 2022, Graham suddenly fell ill and his blood pressure dropped to a dangerous level. Taken to an Orlando hospital, his conditioned worsened. The decision was made to life-flight the now three-year-old back to St. Louis where he was immediately moved to the pediatric intensive care unit (PICU) and placed on a special machine called ECMO (Extracorporeal Membrane Oxygenation).
“ECMO supports both the lungs and the heart and lets the body’s organs rest while doctors diagnose the problem and determine next steps,” explained ECMO Coordinator Caitlin Sailor, BSN, RN, CCRN, CPN. “We have a large team of 30 nurses trained in ECMO procedures, along with three perfusionists and several ICU physicians and surgeons who care for patients who need ECMO.”
Waiting for a new heart
With extensive expertise in the use of ECMO, SSM Health Cardinal Glennon is certified as a Gold Level Center of Excellence for ECMO care. While some patients remain on ECMO for weeks or months, Graham was on it for just two days before surgeons made the decision with the family to put Graham on the waiting list for a heart transplant and implant a mechanical ventricular assist device (VAD) that would serve as a “bridge” to help Graham breathe until a new heart became available. The large, complex machinery meant that Graham couldn’t leave the hospital. Cardinal Glennon became the family’s home away from home. Nurses and hospital staff rallied around the family for three months. Tori remembers many of them during critical times.
“The night nurses were undercover MVPs,” said Tori. “Morgan Archer, RN, was our nurse during our hardest night, the night before Graham went on ECMO. She was so attentive to detail and really took over so that Zach and I could sleep. Sydney Connor, BSN, RN was there as well, and she was so confident and calm as we got used to all the machines. Annika Hummel, BSN, RN, won a hospital Daisy Award for her amazing-ness with Graham. There are so many others. I want to say that the PICU, ECMO and heart teams are who we celebrate for keeping Graham in the best shape possible as we prepared for transplant.”
Many more were on hand to normalize as best as possible Graham’s days in the hospital. The family learned quickly how to move the bulky equipment around the hospital so that Graham could walk around and go to the playroom or outside as often as possible. “His days were filled with all things cars – hiding cars around the unit, racing them on any surface he could find, doing car-themed crafts, and reading car-themed books,” Tori said. “He was able to experience some much-needed distractions with the help of his army of caretakers.”
Five months went by. Then, on Thanksgiving Day while the family celebrated by eating pie in the PICU conference room, they were told a heart was available. “We were over the moon that Graham would receive a heart transplant, but simultaneously, our hearts were breaking for the donor’s family,” said Tori. Soon after, Graham was discharged from the hospital and headed home.
Life after the heart transplant
Graham is now back in school, happily playing with friends and family. He returns to SSM Health Cardinal Glennon for frequent check-ups. Oftentimes, the family is seen eating breakfast with the overnight nurses from the PICU, laughing with physicians during clinic visits, or stopping by the PICU to visit staff.
Sailor says she and the PICU team look forward to seeing Graham run around and riding a tricycle whenever he comes to visit. “It’s so awesome when kids come back because we get to see them when they are well and happy,” she said. “This is why we do what we do — work as hard as we can to get kids and their families through these challenges. To see Graham and his family so happy, it’s the best feeling.”
On the horizon, a Disney cruise for the family. “We want to meet with the firefighters who helped Graham before he had his transplant,” said Tori. “We are thankful for so many people who were there for Graham and us. And we will honor the life of Graham’s donor and the bravery of their family. We are forever grateful for Graham’s second chance at life and for the selfless act of his donor’s family.”
To learn about how to make an impact for kids like Graham, visit the SSM Health Cardinal Glennon Children’s Hospital Foundation website at glennon.org.
