A few days before Christmas, Daniele can go home with a heart that starts beating again with the strength a teenager needs. With Duchenne muscular dystrophy, degenerative neuromuscular disease and hypokinetic dilated cardiomyopathy, the 15-year-old boy underwent cardiac surgery on November 21, for the implantation of a third generation permanent artificial heart.
Daniele’s story, with the dream of becoming a chef, is that of an intervention that the NeMO Naples Clinical Center, of which he is a patient, and the UOSD – Simple Departmental Operational Unit – of Mechanical Assistance to the Club and Transplants in adolescent patients of the ‘Monaldi Hospital, they define as “revolutionary and made possible by an incredible team effort”. “Synergy and dialogue are the basis of the public-private social partnership on which the NeMO Clinical Center is founded – declares Maurizio di Mauro, general manager of the Colli Hospital – Thanks to the multidisciplinarity and collaboration between hospital and clinical center we respond specifically to the needs of those suffering from neuromuscular and neurodegenerative diseases ”
Since May, the NeMO team has taken charge of Daniele by starting targeted pharmacological treatments. Among these, there is also an ‘off-label’ drug for pediatric age. This approach made it possible to keep the clinical picture as stable as possible. However, as the cardiomyopathy progressed, the specialists agreed: the only possibility was a very delicate surgical intervention, with the insertion of a mechanical assistance device to the circulation L-VAD (Ventricular Assist Device). “A little over a year after the start of the NeMO Center in Naples, Daniele’s experience confirms that the path taken is the right one – highlights Alberto Fontana, president of the NeMO Clinical Centers – and the ability to continue working together, the person at the center of a shared care project is more crucial than ever “.
Given the young age, it was decided for a third generation Heart Mate 3 device, which allows the guarantee of operation for a much longer time. The installation technique considered the boy’s daily life, tied to a wheelchair, studying the most correct way to avoid situations such as decubitus. Muscular dystrophies are neuromuscular and degenerative diseases. Duchenne’s is the most severe, although life expectancy is increasing dramatically thanks to advances in heart and respiratory care. In Campania there are almost 4,000 people with a neuromuscular disease, about 2,000 with muscular dystrophies.
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