The project used data from 14 European countries and found information on survival and health for 180,000 children with a birth defect and 2,000,000 children without a birth defect. They looked at how these children are doing for the first ten years. The impact on parents was also investigated.
The results of the surveys are made for infographics.
See all infographics at EUROlinkCAT v5 (visme.co)
Research has shown that parents of these children need positive information from professionals. They want more information and support when it comes to their child’s abilities.
Nearly half of the 1,070 parents who conducted an online survey in 10 European countries reported that they would have sought professional psychological support around the time of their child’s diagnosis. Only 15% reported that they had actually received it.
The project team found that about 97 out of 100 children born in 2005-2014 with a birth defect reached 10 years of age. If a child with a congenital defect dies, it is usually within the first year of life. Whether a child survives also depends on the severity of the birth defect. If more than one birth defect was present, the survival rate decreased. Strikingly, children born between 2005-2014 had a significantly greater chance of surviving a birth defect compared to children born between 1995-2004. There were also large differences in survival between different European regions.
Risk of other diseases
Children born with birth defects had a 40% greater risk of developing asthma than children 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. Nearly half of children under one year born with severe heart disease needed cardiovascular medication to treat their condition, but this dropped to one in six after one year.
Children with birth defects came to the hospital more often than children without birth defects; 85% of them were admitted the first year against 31% of the children without congenital abnormalities. After admission, these children were two to three times longer compared to children without birth defects. The outlook is more positive after the first year with fewer and shorter stays.
Children with congenital defects were operated on more often and at a younger age than children without congenital defects.
Health experiences during the COVID-19 pandemic
The online survey was conducted from March to July 2021. Nearly two-thirds of parents in the United Kingdom (UK) and Poland reported “canceled or delayed” procedures, compared to only about 20% in Germany, the Netherlands and Belgium. The UK and Poland also had the highest percentage of parents reporting “canceled or delayed” surgeries, 33% and 35% respectively, compared to only 8% in Germany. If a country’s healthcare system is disrupted by a pandemic, it may be a reflection of the resilience of the healthcare system. It raises the question of whether the care of these children can be improved in some regions if the whole health system becomes more robust.
In addition to Dr. Hermien de Walle from Eurocat Holland was Dr. Marian Bakker, Drs. Renée Lutke and Nicole Siemensma-Mühlenberg involved. 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. Interested? Visit EUROlinkCAT – Establishment of a connected European cohort of children with congenital anomalies