Lessons Learned From a Program to Support Small Patients on VAD at Home
How can one develop a program for small children on VAD living at home while waiting on the heart transplantation list?
Until a few years ago, mechanical circulatory support in infants and young children was associated with a lot of effort, a large driving console, a long hospital stay, and even life and school in hospital. A few years ago, everything got a little easier with the introduction of a mobile, much smaller driving console, the Excor Active® from Berlin Heart. Suddenly, new possibilities opened up for children, their parents and caregivers, and their doctors.
At the University Hospital Erlangen, Germany, we have a great experience with supporting our young patients for several years until transplantation. Following the example of successful experience with adults, the idea therefore arose to discharge children to their home with the mobile system as well. We identified a patient whose parents also liked the idea. A few months later, after countless discussions and meetings with all possible participants, the decision was made to actually take the risk of discharging the patient home. Doctors on the team, nurses, psychologists, perfusionists, members of the ethics committee, legal department, telemedicine, regional emergency service providers, health insurance company, employees of Berlin Heart, private practice pediatric cardiologist, wound managers, etc. were all necessary for this effort.
At the same time, a great enthusiasm arose to put this idea into practice, and from this point on, also a remarkable dynamic, as well as commitment of all involved, emerged. Not everyone was always in favor, but they could be convinced that for the little child and the family, life at home was clearly a better option than living and waiting in the hospital for years. Since then, even more time has passed, and we have gained enough experience to be confident that this approach is working. But we have also found new problems to be solved. The fatigue of the long waiting time wears down the parents, and even though the child is happy, there are always smaller clinical problems to solve. It is very nice to be a part of this ongoing process and at the same time very demanding to think of, or react to, all kinds of details. So, what does it take to develop such a concept and establish a program at a high-end center? It takes a lot and at the same time not as much as one thought at the beginning. One should plan it well, but also have the courage to do so. A good team is the best foundation, and you should build on it. But you should also exchange with others; worries usually become less through the exchange of experiences, like at the WCPCCS 2023 in Washington, D.C., and this exchange leads you further down the road in the development of ideas or projects. It was a great meeting in Washington, D.C., with very interesting contributions and new, as well as old, proven content. I was happy to be part of it and glad to meet new people from different places, and also learn from their experience.
Oliver Dewald MD
Professor and Head of Department
Department of Cardiac Surgery
University Hospital Center Erlangen
Friedrich Alexander University Erlangen-Nuernberg