Hospital length of stay and surgery among European children with rare structural congenital anomalies – A population-based data linkage study

Ester Garne, Joachim Tan, Mads Damkjaer, Elisa Ballardini, Clara Cavero-Carbonell, Alessio Coi, Laura Garcia-Villodre, Mika Gissler, Joanne Given, Anna Heino, Sue Jordan, Elizabeth Limb, Maria Loane, Amanda J. Neville, Anna Pierini, Anke Rissmann, David Tucker, Stine Kjaer Urhoj, Joan Morris

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Little is known about morbidity for children with rare structural congenital anomalies. This European, population-based data-linkage cohort study analysed data on hospitalisations and surgical procedures for 5948 children born 1995–2014 with 18 rare structural congenital anomalies from nine EUROCAT registries in five countries. In the first year of life, the median length of stay (LOS) ranged from 3.5 days (anotia) to 53.8 days (atresia of bile ducts). Generally, children with gastrointestinal anomalies, bladder anomalies and Prune-Belly had the longest LOS. At ages 1–4, the median LOS per year was ≤3 days for most anomalies. The proportion of children having surgery before age 5 years ranged from 40% to 100%. The median number of surgical procedures for those under 5 years was two or more for 14 of the 18 anomalies and the highest for children with Prune-Belly at 7.4 (95% CI 2.5–12.3). The median age at first surgery for children with atresia of bile ducts was 8.4 weeks (95% CI 7.6–9.2) which is older than international recommendations. Results from the subset of registries with data up to 10 years of age showed that the need for hospitalisations and surgery continued. The burden of disease in early childhood is high for children with rare structural congenital anomalies.
Original languageEnglish
Article number4387
Pages (from-to)1-11
Number of pages11
JournalInternational Journal of Environmental Research and Public Health
Issue number5
Early online date1 Mar 2023
Publication statusPublished online - 1 Mar 2023

Bibliographical note

Funding Information:
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 733001. The funders had no role in the design and conduct of the study; the collection, management, analysis, and interpretation of the data; the preparation, review, or approval of the manuscript; and the decision to submit the manuscript for publication.

Publisher Copyright:
© 2023 by the authors.


  • rare congenital anomalies
  • morbidity
  • length of stay
  • surgery
  • Health, Toxicology and Mutagenesis
  • Public Health, Environmental and Occupational Health
  • Length of Stay
  • Parturition
  • Humans
  • Information Storage and Retrieval
  • Child, Preschool
  • Infant
  • Pregnancy
  • Congenital Abnormalities
  • Hospitals
  • Female
  • Registries
  • Child
  • Cohort Studies
  • Article


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