Silke Mader gave birth to prematurely born twins. Her daughter died soon after birth and her surviving son weighed only 500 grams. Upon giving birth, Silke had to deal with both the grief of losing a child and the fear that her son might not survive. She felt a lingering guilt, wondering if the preterm birth was somehow her fault. Silke felt isolated and her many questions were left unanswered. At that time parental support of any kind did not exist, neither were parents involved in the day-to-day care for their baby.
Silke, a trained kindergarten teacher, could not believe there was no one to turn to and decided to change the situation. She started with a self-help group for parents in Munich, created and distributed information flyers, and created a community for parents to turn to. Silke soon became chairwoman of the national self-help association for the care of preterm infants, which she led from 2003 to 2009. During this time she managed to implement the first guidelines for continuing care for preterm children in Germany, which today is a role model in Europe. Bolstered by strong supporters, Silke saw that the prevention, treatment and care for preterm infants and the support for their families needed to be dealt with at a European level – and she set out to start EFCNI.
Colleagues and supporters note her authentic and straightforward approach. Silke refuses to attend events or expert congresses if patient organisations are not invited as active contributors. One renowned healthcare expert described working with her: “And along comes this involved mother who gets experts, politicians and patients to work effectively. None of us have the time or distance to do so – she oversees the system and gave herself permission to guide us towards real large changes. We all follow.”
(Quelle: Ashoka Germany)