Herznetztag 2023

Herznetz.ch is a non-profit association that offers help for those affected with congenital heart defects. It is the national umbrella organization of organizations that cares for patients with congenital heart defects and was founded on April 28, 2016 and is based in Basel. The two heart specialists Prof. Dr. medical Daniel Tobler, University Hospital Basel, and Prof. Dr. medical Christian Balmer, Children's Hospital Zurich, initiated this project. Herznetz.ch aims to improve medical care, the quality of life and the social integration of children and adults with congenital heart defects and their families in Switzerland and the Principality of Liechtenstein under the motto: Inform, network, help. Members are the self-help groups (parents' association for children with heart disease (EVHK), Cuore Matto, Coeur battant, Fontanherzen Switzerland), professional groups (Swiss Society for Pediatric Cardiology (SGPK), working group for adults and teenagers with congenital heart defects (WATCH), interest group care for congenital heart defects) and the research organizations (GUCH Switzerland association and Swiss association for the promotion of children's heart research).

Interesting facts about congenital heart defects

Congenital heart defects are the most common birth defects. In Switzerland, every 100th child is born with a congenital heart defect. Many of these children require one or more heart surgeries in early childhood to survive. Nevertheless, many children are not completely healed after surviving heart surgery.

Thanks to the achievements in pediatric heart surgery, improved postoperative intensive care and regular follow-up care by pediatric cardiologists, the mortality rate of children with congenital heart defects has improved significantly in recent years. The chances of surviving growing up, even with a serious heart defect, are almost 90%. This has led to a steady increase in the number of patients with congenital heart defects in Switzerland. According to estimates, around 25,000 affected adults and 15,000 affected children live in Switzerland. These children, young people and adults and their relatives go through changing problem areas in their lives, which very often are not covered by basic medical care. In contrast to other chronic diseases, congenital heart defects are not directly recognizable (no handicap that is visible from the outside).

The problem areas can be of different types:

• Medical: Frequent visits to the doctor, frequent hospital stays, medical interventions and repeated heart operations, side effects from medication (fatigue, increased risk of bleeding and long-term medical consequences such as arrhythmias, cardiac insufficiency, stroke, problem pregnancies, reduced life expectancy, mental disorders (depression, anxiety disorders, social withdrawal))
• Restrictions in everyday life: Reduced physical performance due to the lower resilience and reduced pumping power of the heart, problems at school (frequent absences due to doctor visits and hospital stays), handicap in sporting activities, difficult integration into the professional world, financial difficulties, disadvantages insurance, exclusion from the military, etc. Therefore, these patients have special lifelong needs in terms of a chronic disease:
• Specialized treatment centers with specifically trained heart specialists for the correct diagnosis and therapy and aftercare (heart surgery, catheter interventions, pacemaker therapy, heart transplants)
• Specific support for those affected and their families (choice of occupation, integration, insurance issues, maintenance, information)
• Documentation of medical diagnostics and treatment and implementation of current research results.
• Exchange with other affected persons and their relatives

Goals Heart Network Day

The tasks of herznetz.ch include the promotion of networking between those affected and the experts as well as the exchange of knowledge between the member organizations. For this purpose, Herznetz.ch organizes an event once a year on various aspects of congenital heart defects, the "Herznetz Day". This event offers a platform for those affected and their relatives to find out more about clinical pictures and how to deal with this disease in everyday life and to exchange ideas with other affected people. It should also be fun and games for those affected and their families not neglected, since this is usually very exhausting and stressful for those affected in everyday life.