October 2018 - Daniel is ten months old when the diagnosis of dilated cardiomyopathy throws his and his parents’ world off the rails. The cardiac muscle of his left ventricle is pathologically dilated, which means his heart is no longer able to pump enough blood through his small body.
Daniel’s journey begins in September 2018, when his pediatrician diagnoses him with bronchitis; he is expected to recover within 17 days, but after three weeks his condition has worsened rather than improved.
Daniel is admitted to Ward G9 of the Pediatric Cardiology and Pediatric Intensive Care at the University Hospital of Munich, where his parents receive the shocking diagnosis: without a donor heart, their son will not survive.
Until February 2019, doctors at the University Hospital of Munich attempt to stabilize Daniel’s condition using medications. However, in the night of February 10-11, 2019, Daniel undergoes emergency surgery to implant an EXCOR® Pediatric Pump in order to support his left ventricle.
After the operation, Daniel’s condition begins gradually improving. He recovers his appetite, puts on weight, and wants to be actively part of the world around him again. For Daniel’s mother, Diana, who is always by his side, it’s a glimmer of hope after many anxious moments.
“For me, the Berlin Heart is both a blessing and a curse”, she says. “A curse because it keeps us ‘trapped’ at the hospital. A blessing because Daniel is alive. The machine has saved his life. Thanks to it, he has recovered well and regained his strength.”
Day after day, she tries to make the best out of her time at the hospital and looks for new ways to keep Daniel occupied. Fortunately, Daniel makes things easy for her: He’s a quiet, easy child, and despite how much he’s suffered, he’s a real sunshine. If you forget the ventricular assist device for a moment, you might think you are looking at a perfectly healthy little boy.
And like any other child, he loves discovering the world as he plays, laughs, and learns to walk. Since March 2020, the new EXCOR® Active driving unit has given him more independence and mobility.
The driving unit is easier to operate and has a longer battery life, which means Daniel and his family can go outside for a walk on the hospital grounds. Thanks to EXCOR® Active, his world has become a few significant steps larger.
In total, Daniel waited 943 days in the Munich hospital for a donor heart. Almost three years of hoping, fearing, and waiting until the long-awaited news. One night in June 2021, Daniel receives a donor heart. Today, Daniel and his family enjoy life to the fullest and are more than grateful for the wonderful gift they have received.
Daniel’s mother works actively to promote organ donation, and blogs on Facebook and Instagram about her and Daniel’s lives.
See Daniel’s Journey on YouTube - Berlin Heart EXCOR® Active Patient video
Trademarks, images and texts are used with permission by Berlin Heart GmbH.
Juniper S.
Implanted at the age of seven weeks. “Our daughter Juniper was diagnosed with dilated cardiomyopathy when she was only two weeks old. She declined fast, and required a Berlin Heart when she was just seven weeks old. We were terrified! Juniper will be six months soon, and we're still waiting for her new heart, but thanks to Berlin Heart she's acting like a normal baby and thriving. We are beyond grateful for Juniper’s gifted physicians and for this life-saving device that have given us a chance to enjoy our daughter.” (Joni S., Juniper’s mother).
Mathias K.
"The EXCOR® is simply with us. And we are glad that something like this exists. It saved my life." – Mathias K.
Agnes
Agnes, once a healthy little girl, faced a sudden health crisis at the age of one, diagnosed with dilated cardiomyopathy. The road led them to Großhadern hospital, where, after trying various treatments, the doctors deemed Berlin Heart EXCOR® pediatric as Agnes's only chance for survival.
Chantal B.
"The mechanical heart has helped me to survive the time I had to wait for a donor heart“, says Chantal (30), who now works in real estate in Bremen and is simultaneously pursuing a doctorate at the University of Bayreuth.
