Photo: Zenka Reijn-Slegt, Director of Stichting Hartekind & Jolien Roos-Hesslink, Managing Director of the DCVA
What is Stichting Hartekind in short and what does your organization stand for?
Stichting Hartekind (The Heart Child Foundation) (https://www.hartekind.nl/) is the leading organization dedicated to children with congenital heart defects, commonly referred to as heart children. In the Netherlands, approximately 25,000 children are affected by congenital heart conditions. The foundation plays a crucial role in addressing this issue as congenital heart defects stand as the leading cause of death among children up to the age of 15.
Around two-thirds of all heart children undergo one or more life-saving surgeries shortly after birth. However, undergoing surgery does not equate to a cure. Many of these children face a lifelong journey of interventions, hospital visits, and encounter a reduced life expectancy with a diminished quality of life. Consequently, Stichting Hartekind, in collaboration with its volunteers, donors, staff, sponsors, and other stakeholders, is dedicated to the collective effort of enhancing survival rates and improving the quality of life for these children.
What does Stichting Hartekind hope to achieve through its collaboration with the Dutch CardioVascular Alliance (DCVA)?
Every year, approximately 1 in 100 young parents receive the news that their child has a congenital heart defect. The vision of Stichting Hartekind is that children with heart defects can lead normal and healthy lives, although this is unfortunately not guaranteed.
There are still many unanswered questions and aspects that we do not fully comprehend. What causes congenital heart defects? How does the heart muscle develop in these children? Why do some children experience a poorly functioning heart muscle (heart failure) or an arrhythmia after surgery while others do not? How can we detect problems as early as possible? What medications are most effective for children? What can be done to address their developmental challenges? How can we support these children in a way that maximizes their quality of life, and consequently, that of their parents, siblings, and family? Understanding the origins of these issues enables us to develop new treatments or, ideally, prevent the problems altogether.
By joining forces as a partner of the DCVA, Stichting Hartekind is confident that more can be achieved for these children. The disease burden for heart children is unfortunately often significant, directly impacting the overall cardiovascular disease burden. In aligning with the DCVA, Stichting Hartekind shares the ambition to reduce the cardiovascular disease burden by 25% by the year 2030.
What does Stichting Hartekind contribute to the DCVA?
Within an alliance, mutual benefit and a shared mission foster a connection among alliance members. The focus of Stichting Hartekind on children with congenital heart defects is vital and constitutes a significant addition to the DCVA.
Innovative scientific research into congenital heart defects necessitates an approach tailored to the specific characteristics of this form of cardiovascular disease. For instance, the mechanisms underlying the development of heart failure and arrhythmias in congenital heart defects differ significantly from those in acquired cardiovascular diseases throughout life. While the latter primarily involve issues with the left ventricle, children with congenital heart defects often experience problems with the function of the right ventricle.
Many children with heart defects face lifelong interventions and hospital visits, enduring a lower quality of life on a daily basis and having a shorter life expectancy. As the survival of patients with congenital heart defects continues to increase, understanding the origins of symptoms, early recognition, and personalized prevention and intervention become crucial in reducing and, where possible, preventing the cardiovascular disease burden.
The unique collaboration within the DCVA alliance brings together the best scientists, patient representatives, the academic community, healthcare professionals, industry, and government. As a relatively small foundation, access to knowledge, experience, insights, funding sources, and collaboration is of immense value. The children with heart defects today, tomorrow, and the adults with congenital heart defects (approximately 50,000) deserve the very best care for a better life. What we find particularly noteworthy within the alliance is the opportunity to swiftly translate outstanding science into health improvement—a step often insufficiently emphasized but one that makes a crucial difference.