Perinatal lethal conditions: The effect of diagnosis on decision making

Objective: To identify factors influencing pregnancy management decisions following identification of a perinatal lethal condition. Methods: One hundred thirty pregnancies with perinatal lethal conditions diagnosed before 24 weeks’ gestation were examined. Information collected included demographic data, estimated gestational age at presentation, referral indication, nature of the defect, and performance of autopsy. Results: Eighty-seven families elected to abort affected pregnancies and 43 elected to continue. Demographic factors did not influence decision making, nor did gestational age at diagnosis or referral indication. When comparing the diagnosis of one lethal condition with diagnoses of all other lethal conditions, pregnancies with a central nervous system defect or severe urinary tract defect were more often aborted; those with unexplained severe oligohydramnios and twin pregnancies in which at least one twin was affected were more often continued. Autopsy was obtained much more often in pregnancies that were aborted than in those that were continued. Conclusion: The type of defect correlates well with the pregnancy management decision. It is important to consider the type of malformation, certainty of the diagnosis, and level of medical understanding when counseling patients after the diagnosis of a lethal fetal defect. Because many patients will continue pregnancies diagnosed with a perinatal lethal condition, the physician should convey understanding and acceptance of a decision not to abort such a pregnancy. The importance of follow-up testing, including autopsy when appropriate, should be stated clearly.