Even so, they were concerned and took Ben to see their pediatrician. The pediatrician examined Ben thoroughly. He was breathing too fast and not deeply enough; the pediatrician was also concerned about abnormal heart murmurs. So, she immediately referred Ben to the pediatric cardiology department at the DONAUISAR hospital in Deggendorf (Germany).
With the help of an ultrasound, the doctors there determined that Ben had a serious heart condition and, in the worst case, would need a heart transplantation. The diagnosis came as a shock to Ben's parents, who just the day before believed they were a completely normal and, above all, healthy family. And things got worse: the doctors failed to stabilize Ben's heart function with the help of medications. Just two days later, Ben was so sick that he was flown by helicopter to the Munich University Hospital, Großhadern Campus, more than 160 km away.
Here, Ben's parents found out that Ben's left atrium was much too big. The diagnosis was restrictive cardiomyopathy, a cardiac muscle disease in which the cardiac muscle hardens and is no longer able to properly expand and allow blood to flow in. In this rare condition, blood flow from the heart is reduced and the blood builds up in front of the ventricle. At this point it became certain that a donor heart was the only chance for their son to go on living.
While Ben was still in the intensive care unit, for the first time his parents saw a child who was being supported by the EXCOR® ventricular assist device on ward G9 of the Department of Pediatric Cardiology and Pediatric Intensive Care Medicine. However, they initially suppressed the idea that their son could also be dependent on it.
At the beginning of November his condition had stabilized to such an extent that he could be listed for an organ donation at Eurotransplant. Still dependent on medication, he was even discharged a few days later in order to be able to spend the waiting period at home.
But in mid-January Ben struggled with an inflammation of the gallbladder and had to be admitted to the Munich University Hospital again. His heart was not able to cope with this strain, so the doctors decided to operate to reconstruct the mitral valve at the beginning of February 2020. Ben's parents were informed in advance that if complications arose during the operation, implantation of the EXCOR® Pediatric ventricular assist device would be Ben's last chance.
In fact, Ben left the operating room with an EXCOR® pump to support his left ventricle. What initially came as a shock to Ben's parents turned out to be a relief after a few days. "Our son would not have survived without the Berlin Heart device. What's more, he made a great recovery on the system and fought his way back. Despite the prospect of now having to spend the long wait for a donor heart in the hospital, his regained smile was a blessing for us," said Ben's father.
Nevertheless, the situation was a great burden for Ben's parents. During the week, Ben's mother was there for him around the clock and spent the nights in the Ronald McDonald house near the hospital. At home, his father took care of Ben's big brother, Tim, in addition to working and was more than grateful for the support of the entire family. He spent the weekends at the hospital while Tim was looked after by his grandparents.
In addition, the measures that were being taken as part of the COVID-19 pandemic were troubling them. Ben was moved to a smaller room at the end of the ward and thus isolated even more. His brother and the rest of the family were no longer allowed to visit him either. His freedom of movement was more restricted than before.
So everyone was happier when Ben's ventricular assist device received the new mobile driving unit EXCOR® Active in May 2020. “The change to the new driving unit was a huge relief for us. We were finally able to leave the ward room for a while. During our first long walks around the hospital grounds, Ben looked around wide-eyed. He was enormously happy to see his big brother again on these occasions,” reports Ben's father.
"In addition, the new driving unit made the situation in the ward room more bearable due to the lower volume and heat radiation," added Ben's father.
While Ben and his family were making good use of their new-found freedom, Ben's father received the redeeming call on the evening of June 3, 2020 - a donor heart had become available. That night, Ben was being prepared for the operation and after it had been determined that the donor organ was suitable, he would be given the transplantation on the morning of June 4, 2020.
When his parents saw Ben in the intensive care unit after the operation, they were overwhelmed. The pump and cannulae were gone and a new heart was beating independently in Ben's chest. Just eight days later, he was transferred from the intensive care unit to the normal ward. He returned home just 23 days after the heart transplantation.
"Ben's case confirms our experience in therapy with the EXCOR® Pediatric. By relieving the strain on their own heart, the system enables children with severe heart conditions to recover and creates the best conditions for a transplantation and a rapid discharge home after surgery" explains Prof. Dr. med. Robert Dalla-Pozza, Senior Consultant in the Department of Pediatric Cardiology and Pediatric Intensive Care Medicine, Munich University Hospital, Großhadern Campus.
"Ben will now have to rely on medication for the rest of his life to prevent his body from rejecting the donor heart. But he's alive and has been given a second chance. We are so grateful for this gift, for the great care of the doctors and nurses in the entire Department of Pediatric Cardiology and Pediatric Intensive Care Medicine at the Munich University Hospital and for the "Berlin Heart" device, which enabled Ben to recover and survive the waiting period until transplantation. However, we would especially like to thank the parents of the organ donor who, in their most difficult hours, allowed their child's heart to be donated” says Ben's father.
The access to some or all shown products may be restricted by country-specific regulatory approvals. The use of EXCOR® VAD for adults, RVAD-support, Excor mobil and EXCOR® Active is not FDA-approved.