Long term follow up study of survival associated with cleft lip and palate at birth.

OBJECTIVE To assess the overall and cause specific mortality of people from birth to 55 years with cleft lip and palate. DESIGN Long term follow up study. SETTING Danish register of deaths. PARTICIPANTS People born with cleft lip and palate between 1943 and 1987, followed to 1998. MAIN OUTCOME MEASURES Observed and expected numbers of deaths, summarised as overall and cause specific standardised mortality ratios. RESULTS 5331 people with cleft lip and palate were followed for 170 421 person years. The expected number of deaths was 259, but 402 occurred, corresponding to a standardised mortality ratio of 1.4 (95% confidence interval 1.3 to 1.6) for males and 1.8 (1.5 to 2.1) for females. The increased risk of mortality was nearly constant for the three intervals at follow up: first year of life, 1-17 years, and 18-55 years. The participants had an increased risk of all major causes of death. CONCLUSIONS People with cleft lip and palate have increased mortality up to age 55. Children born with cleft lip and palate and possibly other congenital malformations may benefit from specific preventive health measures into and throughout adulthood.