The Unknown Journey: Uncertain Experiences in Mothers of Infants With Congenital Heart Disease Before Undergoing Open Heart Surgery

Background: Most children with complex congenital heart disease (CHD) require open-heart surgery within one year of birth to survive. Thus, new mothers of infants with CHD are faced with making unexpected and difficult decisions. Purpose: This study was designed to explore the essence of the maternal uncertain experience prior to infants with CHD undergoing open-heart surgery. Methods: In this study, a phenomenological approach was used and data were collected using open-ended interview guidelines structured around the Uncertainty in Illness Theory. Nine mothers of infants with CHD who had received open-heart surgery were interviewed in a hospital interview room within two weeks the operation. Colaizzi’s (1978) data processing procedure was applied in the post-interview analysis. Results: Five themes emerged: (1) Hit bottom and felt helpless; (2) Hit the road - An overwhelming sense of emergency; (3) The crunch - Do your best to accept destiny (4) Disease brought the unknown; (5) Hope in uncertainty. Conclusions! Implications for Practice: The high-risk nature of and their unfamiliarity with the surgery made the participants experience illness uncertainty. The medical system should develop more-structured CHD information and provide emotional support in a timely manner to alleviate illness uncertainty in mothers of infants with CHD.