Silke Mader and her team work towards improving newborn health and in particular towards providing high-quality treatment and care to preterm infants, ill newborns and their families, resulting in lower short- and long-term health complications and a considerable reduction in healthcare costs. She leads a novel interdisciplinary European project including health professionals, parents, and representatives from the business and government sectors as well as other non-government organizations to develop and implement unprecedented high quality standards of care for newborn infants.
Worldwide, approximately one baby in ten is born preterm. In Europe, about half a million babies are born too early every year. Preterm birth is the leading cause of infant mortality and morbidity and causes enormous medical, psychological and economic consequences. However, even industrialized countries suffer from a lack of infrastructure needed to effectively prevent preterm birth and to take care for preterm and ill born babies from the moment of birth till adult life. Silke Mader intends to overcome these structural failings. Together with her team, she has systematically built a collaborative network of stakeholders who work together to make newborn health a priority with the intention of implementing and improving standards of care, first in Europe and later on hopefully also beyond.
„In Europe, about half a million babies are born too early every year.“
Having worked in the health field on local, national, and international levels, Silke realized that for large-scale change to occur in the health system, three things needed to be achieved. First, affected parents needed to be involved in the day-to-day care quality improvements alongside both, healthcare professionals. Second, resources and players from disparate sectors of society – patients, healthcare experts, researchers, government and health policy specialists, as well as business – needed to be mobilized in order to create overarching solutions. And third, a cross-country dialogue involving both, bottom-up and top-down engagement needed to be sparked in order to achieve the level of legitimacy necessary for systemic reforms. Through her institution, the European Foundation for the Care of Newborn Infants (“EFCNI”), Silke successfully pursues all three objectives. Through a guided process, stakeholders from all across Europe actively work together, to create a mutually understood framework of child’s progression from preconception to adulthood. Silke includes business representatives in this process to foster their understanding of the problem and to galvanize their support (both financial and non-financial). She is bringing a new transparency to the field while boosting public awareness and policy reform through international campaigns and the empowerment of parent organizations.
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.”