title: Long-term survival for infants born with orofacial clefts in Western Australia.
abstract: BACKGROUND
  Only two population-based studies have reported survival beyond 15 years for individuals with orofacial clefts (OFC), and only for individuals with isolated OFC. Compared with the general population, long-term survival was similar for individuals with cleft lip only, and lower for individuals with cleft palate only. Results for those born with isolated cleft lip and cleft palate were inconsistent.
  
  
  METHODS
  Using linked population-based health data, including a congenital anomaly register with active surveillance and diagnoses up to 6 years, we compared survival at 1, 5, and 20 years for infants born 1980 to 2010 with, and without OFC.
  
  
  RESULTS
  Of the 8112 live born infants in the cohort, 186 died before 20 years; most (81%) died during infancy. Compared with infants without OFC, infants born with all types of isolated OFC ± additional minor anomalies had similar infant survival (around 99%), but we found lower survival for infants with all cleft types and an additional major anomaly (66-84%). From 1 to 5 years, only infants with cleft palate only and an additional major anomaly had lower survival (97%) compared with children without OFC (99.9%). From 5 to 20 years, children with all cleft types, with or without additional major anomalies had similar survival to children without OFC (98-100%).
  
  
  CONCLUSIONS
  Parents with a child diagnosed with an OFC ± additional minor anomalies only can be reassured that the OFC does not influence survival rates in infancy, or long-term. Infant survival was lower only for children with OFC and additional major anomalies.
authors.affiliation: Sydney School of Public Health, University of Sydney, New South Wales.
authors.forename: Jane C
authors.initials: JC
authors.lastname: Bell
authors.affiliation: Population Perinatal Health Research, Kolling Institute for Medical Research, University of Sydney, New South Wales.
authors.forename: Natasha
authors.initials: N
authors.lastname: Nassar
authors.affiliation: Western Australian Register of Developmental Anomalies, King Edward Memorial Hospital, Subiaco, Western Australia.|Telethon Institute for Child Health Research, Centre for Child Health Research, University of Western Australia, Western Australia.
authors.forename: Carol
authors.initials: C
authors.lastname: Bower
authors.affiliation: School of Public Health and Community Medicine, University of New South Wales, New South Wales.
authors.forename: Robin M
authors.initials: RM
authors.lastname: Turner
authors.affiliation: Sydney School of Public Health, University of Sydney, New South Wales.
authors.forename: Camille
authors.initials: C
authors.lastname: Raynes-Greenow
mesh_terms: D000015:Abnormalities, Multiple / Q000453:epidemiology / Q000401:mortality*; D002648:Child; D046688:Child Mortality / Q000639:trends*; D002675:Child, Preschool; D002971:Cleft Lip / Q000453:epidemiology / Q000401:mortality*; D002972:Cleft Palate / Q000453:epidemiology / Q000401:mortality*; D005260:Female; D006801:Humans; D007223:Infant; D007226:Infant Mortality / Q000639:trends*; D008297:Male; D012189:Retrospective Studies; D016019:Survival Analysis; D014904:Western Australia / Q000453:epidemiology
keywords: Western Australia; cleft lip; cleft palate; medical record linkage; survival