The true power of parents

Depending where in the European Union (EU) a woman becomes pregnant or a baby is born, the care received will vary. Wide differences still exist in morbidity and mortality for women and newborns between countries as well as within. Preterm deliveries in Europe make up about 5-15% of all births and disproportionately affect the poorer families.

Parents and healthcare professionals felt the urgent need to act and to give our most vulnerable group - newborns – a voice. Thus, in 2008 the European Foundation for the Care of Newborn Infants (EFCNI) was founded.

Our vision is that every child in Europe receives the best possible start in life, aiming to reduce the preterm birth rate, prevent complications and to provide the best possible treatment and care, thus improving long-term health.

Combining Powers

EFCNI provides a platform for countries and stakeholders across Europe to unite and take action for improving care for mothers and newborns. We are motivated especially by parents whose lives have been changed by having or losing a preterm baby.

We aim to achieve our goals through several key pathways:

Mobilizing the public

Considering the increasing preterm birth rates across Europe and the low public perception, our aim is to increase public awareness and educate people all over Europe.

Preterm infants need your vote!

In 2011, EFCNI started its first European campaign “ene,mene,mini” with the slogan “One baby in ten is born premature. Worldwide.” On the campaign website supporters can also vote for a 10 point "Call to Action for Newborn Health" in 27 different languages. 

The socks line campaign, mainly used to promote World Prematurity Day, is being adopted across Europe and beyond. The message “One baby in ten is born premature. Worldwide." is spread all over the world by putting baby socks on clothes lines, with one in ten being a small sock. The Czech parent organization Nedoklubko even set the Guinness World record in Prague last year, with over 5,000 socks. Some parent groups include photos of a preterm baby behind the small socks to personalize this campaign.

Mobilizing Parents

Depending where in the European Union (EU) a woman becomes pregnant or a baby is born, the care received will vary. Wide differences still exist in morbidity and mortality for women and newborns between countries as well as within. Preterm deliveries in Europe make up about 5-15% of all births and disproportionately affect the poorer families.

EFCNI supports parents to empower themselves by providing information, material, network and continuous support to build an organization and increase influence in their countries.

Representatives from parent organizations across Europe and beyond come together twice a year. We are delighted that we can help parents connect and support each other to use their strength and power to initiate changes in their home countries.

Collaborating with health professionals

Excellent care through cross-divisional-healthcare teams in the first minutes and hours after birth is crucial for the preterm baby’s health and life. In order to guarantee this care, perinatal centres need highly trained, specialised health care professionals around the clock. This is where targeted lobbying for high quality and continuous training of health professionals in neonatal care and neonatal research is required. We have much more success when those who need care and those who provide it, i.e. parents and doctors, combine forces and speak with one voice. Therefore, our primary aim is to facilitate cooperation and dialogue between parents and doctors of every national and international association in Europe with one common goal: to improve infant care regardless of any cultural, religious or political background.

Mobilizing politicians

Despite the worrying trend of increasing rates of preterm birth, newborn health still rank low on policy agendas in many countries. Long-term changes and improvements, however, need policy strategies and programmes. Therefore, one of our main focuses lies also on policy and advocacy. Together with parents and health professionals, we mobilize politicians on EU and national level for an improved care of preterm infants, research and education.

Milestones in the fight for better care

In 2010, EFCNI published the EU benchmarking report “too little, too late? Why Europe should do more for preterm infants” to help policy makers capture the impact of prematurity across Europe.

As a result of the devastating findings of the report, “Caring for Tomorrow - the EFCNI White Paper on Maternal and Newborn Health and Aftercare Services,” was published in 2011. It highlights some of the key concerns and provides recommendations of care with regard to one of Europe’s most vulnerable, yet overlooked patient group - our preterm infants.

This led to a strong movement of stakeholders on national and European level, health professionals and parents working together to tackle the growing burden of prematurity. More than 30 Members of the European Parliament, forming the Interest Group of Maternal and Neonatal Health, are now actively engaged in changing European policy for a best possible start in life.

17 November, as an awareness day for preterm babies, was chosen back in 2008 during the first ever parent groups meeting. It was the birth date of one of EFCNI’s founder’s first born healthy daughter after the loss of his preterm triplets. The firstglobally celebrated World Prematurity Day took then place in 2011. It is wonderful to see that World Prematurity Day is now supported by so many organizations, societies, professionals, governments but also companies and individuals around the world.

Empowerment of parents is the key to all success!

Through their pain and their love for their children, parents can be the greatest force to change policy and practice locally and even globally. Combining the incredible power of parents, together with the knowledge of professionals can change the world for all babies born too soon.

Our message to parents all over the world:  You are the strongest advocate for your baby. Take the courage to give your baby the voice to be heard!

This blog is part of a series on HNN that will lead to World Prematuriy Day, November 17, discussing preterm birth and highlighting the actions needed to prevent and reduce preterm birth, the leading cause of newborn deaths. Join us as we discover that everyone has a role to play. To get involved and learn more, please visit www.facebook.com/WorldPrematurityDay.

• Join the Global Movement to Tackle Preterm Birth, by JoAnn Paradis
• Myths and Misconceptions about preterm birth, by Mary Kinney
• Preterm birth can be reduced if critical actions are taken, by Michael Gravett