EFCNI – European Foundation for the Care of Newborn Infants
Silke Mader is the Chairwoman of the Executive Board and co-founder of EFCNI. In 1997, her twins were born in the 25th week of pregnancy, and Silke Mader and her family did not receive enough information and support she needed. Unfortunately, one of them died a few days after birth. During her time in hospital and afterwards, Silke Mader was faced with the non-existence of support of any kind, the absence of public awareness and the lack of information and education for parents during pregnancy. Her motivation is to prevent parents from making similar experiences in such painful situations. As the conditions throughout Europe are distressingly similar and preterm children urgently need a voice within Europe and worldwide, she decided to take on the role of chair on the Executive Board of EFCNI.
Silke Mader is co-editor of the EFCNI Benchmarking Report “Too little, Too Late? Why Europe Should do more for Preterm Infants”, “Caring for Tomorrow” – the EFCNI White Paper on Maternal and Newborn Health and Aftercare Services and technical editor of the “Born too Soon” Global Action Report on Preterm Birth. Besides this, Silke Mader is author and editor of many other publications on topics related to maternal and newborn health.
In 2012 Silke Mader was awarded the “Prix Courage” by ZDF television programme “ML mona lisa” in cooperation with the cosmetics company Clarins. 2013 she received the Medal for Particular Services to Bavaria in a United Europe. Since 2014 she is Honorary Lecturer at the School of Nursing and Midwifery, Queen’s University Belfast, Northern Ireland. In 2015, Silke Mader has been awarded as social entrepreneur and Ashoka Fellow and in 2016 she received the Bavarian State Medal for Services concerning Health and Long-term Care.
Development of newborn standards: The power of parents in influencing the quality of neonatal care
- Mader, European Foundation for the Care of Newborn Infants (EFCNI)
Worldwide, preterm birth is the leading cause of death during infancy and a major cause of morbidity in both, developed and developing countries. Although significant advances have been made in recent years and survival after preterm birth in Europe is high, preterm birth remains a major health issue. A significant proportion of children, and their families, must cope with long-term physical, psychological, emotional and financial challenges. The treatment for preterm and ill babies is very complex and requires specially trained healthcare professionals. Against this background, it is even more worrying that the organisation of care, the education of healthcare professionals, and the structure and provision of neonatal care vary widely across Europe.
Materials and methods:
The European Foundation for the Care of Newborn Infants (EFCNI) is bringing together parents, healthcare experts from different disciplines, and scientists with the common goal of reducing preterm birth rates and improving long-term health of preterm and newborn children. Silke Mader, Co-founder and chairwoman of the European Foundation for the Care of Newborn Infants (EFCNI) knows from her own experience that a family needs much more than medical care and support – the entire family needs to be in the centre of interest.
Since its establishment in 2008, EFCNI represents the interests of preterm and newborn infants and their families. The foundation is founder of World Prematurity Day – celebrated each year on 17th November and created in the meanwhile a worldwide network of parent representatives. Just recently, EFCNI founded the GLobal Alliance for Newborn CarE (GLANCE).
In order to promote a high and equitable level of perinatal and neonatal care, EFCNI developed, together with 220 experts from over 30 countries, 96 European Standards of Care for Newborn Health. These standards serve as reference standards and need to be translated on a national level. The implementation of the standards will result in a more equitable care all around Europe, which will have a long-term impact on preterm and critically ill infants, and their families.
EFCNI is working on several different projects that all follow EFCNI´s vision – to ensure that every baby independent of where it is born receives the best start in life.
European Standards of Care for Newborn Health (2018). https://newborn-health-standards.org