Background/purpose: From 1978 to 2000, 10 pairs of conjoined twins were successfully separated with 14 surviving twins. Six were separated emergently because of the death or impending death of their respective twins. All of the remaining 4 sets required at least one emergency operation on at least one twin before subsequent separations.
Methods: A 6-item questionnaire was developed to interview this unique cohort. The question design was open ended to maximize opportunity for patient/family response. Families were administered the same questionnaire in face-to-face interviews. The physician-author asked questions related to physical health and disability, whereas the social worker-author asked questions related to developmental, educational, psychosocial, and family functioning.
Results: The first 4 surviving twins have graduated from college. The 1981 twin completed high school. The remaining 9 twins are in classes appropriate for their age. All 14 twins have required operations subsequent to initial discharge, particularly to correct urological, orthopedic, neurosurgical, as well as pediatric surgical problems.
Conclusions: In utero diagnosis of conjoined twins by ultrasonography compels physicians and parents early in the pregnancy to make decisions concerning possible surgical separation and the alternative of pregnancy termination. The case reports presented offer additional information for physicians and parents to make informed decisions at a crucial time by illustrating long-term physical and psychological outcomes of 14 surgical survivors.