Why was EFCNI set up?

In spite of all the progress that has been made, children who are born ill, particularly preterm infants, are still a major challenge for the public health system and in many cases put a huge strain on their parents...

About 10% of all newborn infants come into the world too early and about 1-2% are born before the 32nd week of pregnancy (2 months early). These children have a high risk of future development disorders ranging from severe mental and physical impairment to attention deficit disorders and specific learning difficulties. Preterm infants are also particularly prone to secondary problems, such as an increased tendency to infection and respiratory infections. However, even infants born on their due date can fall ill before or during delivery (e.g. stroke or lack of oxygen) and suffer lifelong consequences.

Awareness of the problems and their long-term effects is low, both in society and within the public health system ...

The situation facing doctors and scientists is that whilst improvements in intensive medicine have reduced the overall mortality rate of newborn infants, there has not been an equivalent reduction in secondary problems, such as neurological disorders. Therefore it is urgent that new ways of improving intensive neonatal medicine and developing new diagnostic and therapeutic measures to protect and nurture the brain are sought. Researchers and neonatologists are thereby confronted with the problem that there is no lobby for children, this is the case for newborn infants in particular. For example, the amount of money currently spent in medical care to prolong the life of a newborn infant by one year, is only a fraction of that usually spent on adults.

At 10% of all births, the proportion of infants born prematurely is very high. Preterm infants, particularly those with a very low birth weight, suffer from various forms of impairment. However, compared to widespread diseases, such as high blood sugar and heart attack in adults, these problems are barely reflected in either state-funded or private research.

Whilst a comparison with other serious diseases is certainly problematic, particularly from the standpoint of those affected, it should nevertheless help to illustrate the above problem. A comparison with childhood cancers, for example, serves to illustrate how little public attention is paid to preterm delivery: approx. 0.2 in 100 children develop cancer each year, whereas 2 in 100 children are born much too early (2 months). Everyone has heard of childhood cancer, yet apart from affected parents and health professionals, very few people are aware of the severe long-term effects of a preterm delivery.