Hospital Length of Stay and Surgery among
European Children with Rare Structural Congenital
Anomalies—A Population-Based Data Linkage Study
There is limited data on morbidity in childhood for children with rare congenital anomalies. This EUROlinkCAT study investigated hospitalisations and surgical procedures for 5948 children born 1995-2014 with 18 rare structural congenital anomalies from nine EUROCAT registries in five countries. Our study showed that almost all of these children (85%-99%) were hospitalised in the first year decreasing to half of the children at age 1-4 years. The median length of stay varied greatly between type of congenital anomaly from 3.5 days in the first year for children born with anotia to 53.8 days for children born with atresia of bile ducts. At age 1-4 years the median length of stay per year was under 3 days for the majority of anomalies. The median number of surgical procedures up to age 5 years was 2 or more for 14 of the 18 anomalies and highest for children with the very rare anomaly Prune-Belly at 7.4. Results from the subset of registries with data up to 10 years of age showed that need for hospitalisations and surgery continued. Parents of children with congenital anomalies should be informed about the increased likelihood of lengthy hospitalisations with their child, particularly in the first year of the child’s life, and the associated challenges it creates for having a normal family life and taking care of siblings. The outlook is more positive beyond the first year, where most children require fewer and shorter stays in hospital, though the hospitalisations still exceed those of children without congenital anomalies. Therefore, parents of children with rare congenital anomalies should be adequately supported, not only by health care professionals, but also by relevant authorities and by national health and social policies.