The hours-long wait is agonizing: Every time Mareen and Roy Schimmel glance at the clock, it seems like time is standing still. As their son Kilian undergoes a heart transplant, his brother Jamie is fighting for his life in the intensive care unit.
(Published: June 2021)
Kilian, the somewhat taller and stronger of the 13-year-old twins, first experienced heart pain in 2017, after a soccer practice. His parents thought it was only a persistent cold, but took him to a doctor anyway. The physician opted to refer his young patient to the Fresenius Helios Heart Center Leipzig for a more detailed diagnosis.
“The diagnosis by pediatric cardiology specialists showed Kilian had a genetic heart weakness. We knew we were in good hands at Helios so, at first, we accepted the diagnosis calmly,” said Mareen. As a precaution, the parents took Jamie, who has a slighter build than his brother, to a pediatrician in 2019 for a thorough examination. The blood test, as was the case earlier with Kilian, indicated he also had a genetic heart disorder: In medical terms, a cardiac insufficiency.
This was the start of the family’s ordeal. In May 2020, the parents had to call for emergency assistance after Jamie displayed symptoms consistent with the onset of a stroke. “As before with Kilian, Jamie was transported from Magdeburg to the Heart Center Leipzig, where they implanted a pacemaker with an integrated defibrillator,” said Roy. Shortly thereafter, doctors had to perform the same operation on Kilian.
The sense of security that followed proved to be short lived. The boys’ strength declined steadily to the point that they could rarely walk more than a few hundred meters without taking a break. Doctors at the Heart Center Leipzig placed both boys on the high-priority list for a donor heart.
On the afternoon of February 21, 2021, Mareen got a phone call. “The heart center told us there was an organ available for Kilian. I cannot describe what went through my head when I heard this,” she said. A short time later an ambulance stood at the door. As this was happening, Jamie was already at the heart center, where he had been undergoing extended treatment.
Preparations at the Fresenius Helios hospital began under an established routine. Kilian was prepared for the operation and received anesthesia around midnight. Prof. Dr. Diyar Saeed, Managing Senior Physician for Heart Transplants and Artificial Hearts, and Dr. Marcel Vollroth, Senior Physician for Pediatric Heart Surgery, performed the life-saving surgery. They were assisted by an experienced team of anesthesiologists and nurses. Of the 339 heart transplants performed in 2020 in Germany, 41 were done at the Heart Center Leipzig. “However,” said Dr. Vollroth, “all of them were performed on adults. The last time we transplanted a child’s heart here was in 2010.”
Doctors at the Heart Center Leipzig placed both boys on the high-priority list for a donor heart.
At about 4:30 in the morning, Mareen and Roy received a call that all had gone well. “Professor Saeed told us there were no complications during the operation and that Kilian was doing as well as could be expected,” Mareen said.
But this good news was dampened by Jamie’s condition. The boy was noticeably declining, weakening drastically to the point where his condition had become life threatening. The reason Kilian and not Jamie had received the new heart was the size of the donor organ. “It was too big for Jamie,” explained Dr. Vollroth. Early on, the parents had ruled out making a decision on which boy should be given priority. “For us, the boys were never in a competition with each other,” said Roy.
To keep Jamie alive, doctors decided to implant an artificial heart. This decision, however, was soon superseded: Out of the blue came word from Eurotransplant, an organization distributing donor organs in eight European countries, that they also had a heart for Jamie. “This meant spooling back to the beginning for the entire operation team,” said Dr. Vollroth. Same doctors, same team and the same professional process. For Jamie, this start to a new life began around midnight and ended nearly five hours later.
“For us, the boys were never in a competition with each other.”
Following eight weeks of hospitalization, the family is together again. The boys have gotten used to their new lives as transplant patients with the accompanying mountain of pills. Visits with friends and relatives will have to wait. Even without the COVID-19 pandemic, the risk of infection would be too great. For now, Jamie must content himself with practicing the guitar and Kilian with riding his bicycle in the yard.
Everybody at the Heart Center Leipzig is both happy and proud of the achievement. It was the first time a situation like this had occurred in a cardiac unit anywhere in the world. The successful transplantations for the twins also had a signal function. “In the future, we will again place emphasis on performing heart transplants for children from about seven years of age,” promised Dr. Vollroth, who can count on continued support from Prof. Saeed.