What information do parents of newborns with cleft lip, palate, or both want to know?

Background: The unexpected birth of a baby with a cleft lip and palate (CUP ) is a shocking and traumatic experience, generating anxiety for parents as well as the attendant health care team. Parents frequently leave the hospi tal with many unanswered questions because health care professionals do not educate them adequately. Objective: To determine what information these parents felt was "critical" for them during the immediate newborn period and to determine how the "info rmer" was perceived during these encounters. Design: Retrospective, self-administered questionnaire. Subjects and Methods: Biologic parents of children with isolated CUP aged 6 years and younger were surveyed, The questionnaire asked parents whether t hey remembered discussing diagnosis, prognosis, management, home care, and psychosocial issues, Parents were also asked to rank how "critical" it woul d have been for the "informer" to have discussed certain issues with them d uring this first day. Results: Parents gave the highest priority to feeding and learning to ident ify illness in their baby; 95% wanted to be shown all normal aspects of the ir baby's exam, and 87% wanted to be told that the CUP was not their fault. Usage of proper terminology to describe abnormal findings and receiving as surance that their child was not in pain were also important. Unfortunately , many parents reported that the informers did not address these issues. Conclusions: Parents of newborns with CUP want basic information in the imm ediate newborn period, especially regarding feeding and recognizing illness . These data suggest that informers are not adequately discussing these iss ues with parents.