Babies are not always born on time. The quality of care of premature infants and newborns varies across Europe. New EU standards are being set on how to best stand up for these tiny lives.
The year is 1997. A mother is pregnant for the first time. She goes to the gynaecologist for a routine check-up. Something seems to be wrong, but she is sent home with the recommendation to drink herbal tea. A few days later she goes into labour, 15 weeks too early.
More than one in ten babies are born preterm across the globe, meaning that the babies are born before 37 weeks of pregnancy is completed. Looking more closely at Europe, the World Health Organization (WHO) concludes that those rates can vary from 5% to 10%. One of the challenges is not to assess the frequency of preterm births, but the mortality rates. It difficult to measure and can vary widely between different countries. Social and medical advances are key factors to prevent the death of preterm babies. A baby born in week 25 of pregnancy may survive in Sweden, but not in Bulgaria.
The European Foundation for the Care of Newborn Infants (EFCNI) is determined to diminish this gap. In the end of November they will launch the European Standards for the Care of Newborns, a project aimed to develop a European standard in the care and treatment of newborns. In the lead of the project and co-founder of EFCNI is Silke Mader. She is the mother that went into labour 15 weeks too early in 1997.
When she went into labour 15 weeks to early, doctors discovered that Silke Mader had a severe form of preeclampsia. It is usually characterized by high blood pressure and can damage organs such as the liver and kidneys. If it is not treated properly it can lead to severe – or even fatal – consequences for both the mother and baby: “I was carrying twins. My daughter Lena was born weighing 290 grams and my son Lukas was born weighing 515 grams.”
Mader is from the German region of Bavaria and feels that the health care she received was not up to scratch. “My condition was diagnosed very late, and after the birth of my children we spent over four and a half months in the hospital. My husband was not provided a bed and had to sleep next to me on the floor. Even when we left the hospital, we could not be close to our children. They had 3 hours of visiting time per day. And this was not only the case only for us, but for all parents.”
- Worldwide, 15 million babies are born preterm every year, and the number is rising.
- Preterm birth is defined as a birth ocurring before 37 weeks of pregnancy.
- It is the leading cause of death for children under 5 years of age.
- ¾ of these deaths could be prevented with current and cost-effective interventions.
Family centred care
One of the main focus areas of the new European Standards for the Care of Newborn Infants is to implement family centred care in all EU countries. It aims to bring parents closer to their newborn children and to reduce separation. It can be something as simple as skin-to-skin contact between parents and their newborn child and frequent breastfeeding. This is has been identified to reduce the risk of preterm mortality.
“In the end of the 80s and beginning of the 90s, babies and parents were treated almost inhumanely in terms of separation. Newborn and preterm infants were treated in the same way as adults in intensive care, with very limited visiting hours. The needs of the parents were overlooked,” says neonatologist Dr. Dominique Haumont. She recently retired from Saint-Pierre University Hospital in Brussels, where she spent a large part of her career. She is nonetheless still involved in developing the new European standards.
Dr. Dominique Haumont describes how the introduction of respirators for preterm babies allowed for intensive care. However, this meant that parents were separated from their children to a larger extent. Haumont saw this when she was working in neonatal intensive care in Brussels in the 90s, and decided to get involved. “Thanks to the involvement of devoted neonatologists, we are seeing change. Each preterm infant copes with difficulties in different ways, and that’s why we are moving away from the general and towards the individual.”
In Silke Maders opinion, in many Catholic regions and countries in Europe, conservative culture is one of the biggest obstacles to overcome. “Conservative regions can be very difficult to reach. For example, many of the doctors and nurses do not take off their wedding rings when handling newborn and preterm infants. Even if they wash their hands, this could mean a huge risk of infection for such small and fragile newborns. This is only one of many examples, so changing behaviours like these is a challenge.”
Dr. Dominique Haumont agrees that there is “a great variability in culture” across Europe. Even within a small country like Belgium, there can be different standards and strategies affecting the care of newborns, depending on whether you live in the north or in the south: “Broader European standards are needed, especially to tackle the important challenge of parent-infant closeness.”
After seven days of intensive care, Silke Mader’s daughter Lena passed away. Her son, Lukas, kept fighting. He suffered from developmental dysplasia of the hip, basically meaning that his hip was dislocated. This alongside with many other of Lukas’ conditions, were diagnosed and treated too late in Silke Mader’s opinion. She felt that the care was insufficient to meet her family’s needs. They had to fight for the follow-up care they needed, “There was no support to families in this situation.”
After some time Mader developed severe depression. “I was sad, but also very angry about it.” To deal with her indignation, she joined and headed a self-help group in Munich for parents who had gone through the same thing as her. “Everything happened very quickly, but in 2001 I was elected to the board of a big parent organization and helped to raise the voice of parents in Germany,” she says.
Today, Silke Mader son Lukas is a 21-year-old university student. He is healthy, but still has some problems with his hip and eyes. With proper diagnosis, medical care and follow-up care, this might have been able to be prevented. Mader hopes that the European standards can encourage advances in this area and that no parents or infants in Europe will have to go through what her family had to go through.
“The consequences of insufficient follow-up are huge. It can lead to life-long disabilities. This is not only a huge burden for that individual and the family, but for society.”
“We need to mobilize politicians in their home country, not criticize”
Implementation of the European Standards for the Care of Newborns is not unproblematic. Public health care and health issues overall is within the competences of the member states, not the European Union. This means that the EU does not have any mandate to legally standardize the care of newborns across Europe, but it is up to member states to cooperate in order to create new legal standards regionally and nationally.
Angelika Niebler is a member of the European Parliament, and part of the Interest Group on Maternal and Neonatal Health. “The member states are responsible, and we cannot dictate this from Brussels. There is currently little cooperation between states, and what we at the parliament can do is to raise awareness and inform parliamentary colleagues to support initiatives in their own countries.”
“We need to mobilize politicians in their home country, not criticize,” says Silke Mader.
The retired neonatologist Dr. Dominique Haumont believes that it is not only a harmonization of medical procedures between member states that is needed to diminish the gaps, but also that “financial harmonization is a key to proper implementation.” A neonatal unit in Eastern Europe needs to have comparable financial opportunities as a neonatal unit in Northern Europe; otherwise the issue is stuck on a theoretical level. Without money there is no possibility to change things.
MEP Angelika Niebler disagrees: “This is the wrong approach. Research and innovation is the topic on the European level.” Niebler agrees that money is needed, but it cannot come from the EU directly and be earmarked for this specific issue. This would mean that the EU would be meddling in the business of the member states. “There are structural and cohesion funds that many member states take part of. However, it is up to each country and region to decide how this money is best used.”
Preterm births to increase
World Prematurity Day is held on November 17th every year, a day to show support to preterm babies and their families. Right before this, the medical journal The Lancet published new numbers on the rates of preterm births. The data shows that preterm birth rates are rising in Europe. Dr. Martin Weber from the World Health Organisation says, “There are two main trends. First, differences in preterm birth rates are growing between countries; up to a ten fold difference. Second, progress has slowed down and improvement is not as large as we previously have experienced.”
Silke Mader is aware of the trends. “This is why we are launching the standards and symbolically signing a call to action. 158 professional and parent organizations support these standards. Our dream is to that we in 20 years will have the same level of education and care across Europe.”
Preterm birth in Europe
|Preterm birth rate (%)||Number of preterm births||Preterm birth rate (%)||Number of preterm births|
|7,0||509 066||8,7||690 931|
|European Country||Under-5 child deaths due to direct preterm birth complications (2016)||Number of preterm births (2014)||Percentage of preterm births resulting in death under 5 years of age|
Preterm birth rates from Chawanpaiboon et. al 2018. Lancet Global Health; deaths from preterm birth complications by the WHO and Maternal and Child Epidemiology Estimation Group (MCEE) 2015. Estimates are rounded.