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Surgery allows 11-year-old boy from Rockford, Ill., to return to playing his favorite sport
MADISON, Wis. — If you ask Sezar what he wants for his next birthday, his answer is immediate: Anything related to soccer. The soon-to-be 12-year-old devours videos of his favorite player as he tries to mimic Lionel Messi’s deft dribbling and speed.
Sezar’s obsession with soccer was apparent from his first moments at American Family Children’s Hospital in Madison. However, doctors quickly realized that the same heart that beat for soccer was also beating too hard for his adolescent body.
In the span of two months, Sezar went from playing soccer with his siblings to becoming the first patient to receive a transplant through the pediatric heart transplant program at the UW Health Transplant Center.
The program launched in March 2023 and marks the culmination of years of planning and preparation, according to Nikki Stafford, vice president, pediatric services, UW Health, and president, American Family Children’s Hospital.
“We are very proud that American Family Children’s Hospital stands as a regional leader in the most advanced, comprehensive care for children,” she said. “This incredible achievement wouldn’t be possible without an exceptional partnership of pediatric cardiologists and anesthesiologists, transplant coordinators, nurses, child life specialists and many others.”
The program is actively evaluating and listing children for heart transplant, which will allow families to access the latest therapies available while remaining close to home, according to Dr. Dixon Kaufman, medical director, UW Health Transplant Center, and professor of surgery, University of Wisconsin School of Medicine and Public Health.
“Our ability to perform heart transplants and implant mechanical circulatory support devices here in Madison means we are providing the most advanced medical and surgical heart care for kids,” he said. “We are proud we can offer family-centered, individualized care to our youngest patients from a team that they already know and trust.”
Several serious heart conditions
Sezar’s journey to a heart transplant began in July 2023 with stomach pain and uncontrollable vomiting. After consulting with their primary care physician in Rockford, Ill., Sezar’s parents took him to the Emergency Department at UW Health SwedishAmerican Hospital.
Once there, an echocardiogram showed Sezar was experiencing severe biventricular heart dysfunction. His parents were told he needed to be transferred immediately to the Pediatric Intensive Care Unit at American Family Children’s Hospital in Madison.
The pediatric cardiology team there found two distinct causes of his heart failure: One was a genetic mutation that meant he was more likely to develop cardiomyopathy, which can lead to heart failure, and the other was a previous viral infection that had reached his heart, according to Dr. Sonya Kirmani, medical director, pediatric heart transplant program, UW Health Kids.
“Neither of Sezar’s ventricles were pumping well, and he needed IV medication to support his heart function,” said Kirmani, who is also an assistant professor of pediatrics at the UW School of Medicine and Public Health. “In addition to his heart failure, there was a large clot in the left ventricle; all very serious conditions for an otherwise energetic and active kid.”
With their son facing such a serious diagnosis, Sezar’s parents were able to communicate with the medical team and understand Sezar’s treatment plan in their native language with the assistance of a nationally certified Arabic medical interpreter at UW Health. The family emigrated from Syria to the United States six years ago and are now U.S. citizens. Sezar’s family took comfort knowing they had a medical interpreter who understood their language and culture.
“I am very thankful we were able to come here,” said Sezar’s father Sam. “These are the best doctors, the best nurses and the best interpreters. They were like a family and made him feel like he wasn’t at the hospital.”
Devices provide assists until ultimate goal: Transplant
The team at American Family Children’s Hospital first used medication to slow the progression of Sezar’s heart failure. Following five days of medication, the clot moved, and the team determined it was time to place biventricular assist devices in Sezar’s heart. The implantable, mechanical devices take over for the heart to pump blood.
Dr. Joshua Hermsen, surgical director of the pediatric heart transplant program, UW Health Kids, performed the surgery to place the biventricular assist devices, and within days, the function on the right side of Sezar’s heart recovered. However, the left side of his heart required more permanent support.
Sezar was placed on the national transplant waitlist. While he waited for a new heart, he received a Berlin heart ventricular assist device, a blood pump that sits outside of the body. This surgery was the first of its kind at American Family Children’s Hospital, according to Hermsen.
“We were well prepared after years of hard work and training about how this device works,” said Hermsen, who is also an associate professor of surgery, UW School of Medicine and Public Health. “It is complicated anytime you try to interface human and machines, so I was impressed by how our team took everything in stride to prepare Sezar for a successful surgery.”
The Berlin heart ventricular assist device required that Sezar stay in the hospital until a donor was found. Sam moved into his son’s hospital room while Sezar’s mother remained at home in Rockford to care for their two younger children.
“I saw him more than when we were living at home,” Sam said. “He was really attached to me, and putting the sickness aside, spending time together was a good thing.”
'I had to keep smiling so he wouldn’t feel scared'
Sezar’s care team took his love for soccer and immediately incorporated a ball and goal into his physical therapy exercises. Everyone was allowed to take a kick — the nurses, the therapists, even the medical interpreter.
“They made me love soccer even more,” Sezar said. “They told me walking and kicking was better than sleeping or playing video games all day.”
On the morning of Aug. 21, Kirmani and Hermsen delivered the news to Sam in person: His son would receive a new heart the following day.
Throughout the morning of Aug. 22, Sam focused on keeping his son calm until the moment he entered the operating room, sending him off with a kiss on the forehead.
“I felt so many emotions, but I couldn’t show any of them to Sezar,” he said. “Even though I was scared, I had to keep smiling so he wouldn’t feel scared.”
Hermsen led the transplant procedure after traveling to recover the donated heart and transporting the organ back to Madison. Working simultaneously to prepare Sezar to receive the new heart was Dr. Petros Anagnostopoulos, surgeon-in-chief, American Family Children's Hospital, and professor of surgery, UW School of Medicine and Public Health, alongside an impressive team of physician assistants, anesthesiologists and operating room staff. It was a true team effort to accomplish this and every transplant, according to Hermsen.
“This is a program we have been working to build for years and it felt very fulfilling to complete this first surgery,” he said. “The best part was knowing that Sezar had a path out of the hospital and back to doing what he loves. That is why we do it.”
Following 10 hours in the operating room, Sam watched as his son was wheeled into a recovery room and for the first time, he allowed himself to cry.
“I knew he was one step closer to coming home to us,” Sam said.
'Everything has changed for our entire family'
Following the transplant surgery, Sezar spent three weeks at American Family Children’s Hospital, adjusting to a new daily routine that included multiple medications to ensure his body doesn't reject his new heart. That routine also meant hours of physical therapy to practice how to sit, stand and walk on his own, something Sam said happened within days of the surgery.
On the September day Sezar was able to go home, Sezar’s care team organized a parade complete with bubbles and handmade signs.
An even larger crowd waited for him in Rockford. Family and friends lined the street to his home, playing drums and traditional Syrian music to celebrate his homecoming. Sezar’s mother and younger siblings waited for him as the family of five reunited for the first time in two months.
“This changed the way I think about my whole life,” Sam said. “Everything has changed for our entire family. I feel like I was born again, and I look forward to spending more time with my children.”
Sezar is taking classes online and his parents expect he will return to school in-person in the new year. They also expect a jubilant party for his 12th birthday on Dec. 25, complete with gifts and cake made by his mother.
Sam and Sezar travel to Madison for monthly appointments to monitor his heart function and screen for possible rejection. While he’s excited to be the first child to receive a heart transplant at American Family Children’s Hospital, he’s more excited that he can once more tease his siblings, jump on their trampoline and play soccer in the backyard.
“He is thriving outside the hospital and that is the most you can hope for,” Kirmani said. “I remember being so thrilled to watch him walk out of the unit and go home, knowing we did this well because we did this as a team, and we are prepared to do it again for other families.”