More than 130,000 babies are born with a congenital disorder in Europe each year
EUROlinkCAT, the main European study on the health of children with and without congenital disorders, has been completed. The researchers discovered significant health differences between these children: in the number of deaths, hospitalizations and the number of treatments. More than 130,000 babies are born with a congenital disorder each year in Europe. In the Netherlands, this concerns 1 in 33 children. Epidemiologist Hermien de Walle of UMCG and President of Eurocat Netherlands is one of the initiators of this study.
The project used data from 14 European countries and found information on the survival and health of 180,000 children with a birth defect and 2,000,000 children without a birth defect. We looked at the condition of these children in the first ten years. The effect on the parents was also examined.
The results of the studies were made in graphs. View all charts on EUROlinkCAT v5 (visme.co)
Research has shown that parents of these children need positive information from specialists. They want more information and support when it comes to their children’s abilities. Nearly half of the 1,070 parents who completed an online survey in 10 European countries reported that they would have liked specialized psychological support around the time their child was diagnosed. Only 15% reported that they had already received it.
The project team found that about 97 out of every 100 children born in 2005-2014 with a birth defect reached the age of 10. If a baby with a birth defect dies, it is usually within the first year of life. The survival of the child also depends on the severity of the birth defect. If more than one birth defect is present, the survival rate is reduced. Remarkably, children born between 2005-2014 have a much higher chance of surviving a birth defect than children born between 1995-2004. There were also significant differences in survival between the different European regions.
The risk of contracting other diseases
Babies born with birth defects were 40% more likely to develop asthma than babies without birth defects. The results also showed that children with chromosomal abnormalities, such as Down syndrome, were two to three times more likely to develop type 1 diabetes compared to children without birth defects. About half of children under one year of age who were born with severe heart disease required cardiovascular medications to treat their condition, but this dropped to one in six after one year.
Babies with birth defects go to hospitals more often than children without birth defects; 85% of them were admitted in the first year compared to 31% of children without birth defects. Once inside, these babies stayed two to three times longer than babies without birth defects. The outlook is more positive after the first year, with fewer and shorter stays. Children with birth defects are operated on more often and at a younger age than children without birth defects.
Healthcare experiences during the COVID-19 pandemic
The survey was conducted online from March to July 2021. Nearly two-thirds of parents in the United Kingdom (UK) and Poland reported “cancellation or late” measures compared to only about 20% in Germany, the Netherlands and Belgium. The UK and Poland also had the highest percentage of fathers reporting ‘cancelled or late’ surgeries, 33% and 35%, respectively, compared to just 8% in Germany. If a country’s health care is disrupted by a pandemic, this may be a reflection of the health care system’s resilience. This raises the question of whether the care of these children could be improved in some areas if the entire health system became more resilient.
In addition to Dr. Hermine de Waly of the Dutch Eurocat, Dr. Marianne Bakker, Dr. Rene Lutke and Nicole Siemensma-Muhlenberg participated. The results of the EUROlinkCAT project were recently presented at a major conference in Poland.
Data available to researchers
A wealth of data on birth defects and their impact on European children is available to researchers from the Netherlands and abroad. benefit? Visit EUROlinkCAT – Creation of a European Linked Cohort of Babies with Congenital Anomalies
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