Psychosocial responses of parents to their infant’s diagnosis of hypoplastic left heart syndrome

Objective:To evaluate the psychosocial status of mothers and fathers in response to their infant’s diagnosis of hypoplastic left heart syndrome.Design:A study on interviews with parents whose children had survived staged surgery.Setting:Tertiary hospital paediatric ICU.Subjects:A total of 29 parents (16 mothers and 13 fathers) of surviving children.Intervention: A semi-structured face-to-face interview was conducted to explore experiences of parents in response to their infant’s diagnosis, their interaction with the doctor delivering the diagnosis, their deliberation about staged surgery, and their reasons for this choice.Measurement and Main Results: All parents were devastated about their infant’s diagnosis, and most (83%) of them said that the time of the diagnosis and the aftermath was the worst time of their lives. Parents reported helpful and unhelpful communication at this time. Although all parents in this study chose surgery for their infant, when faced with the choice, 17 of them made an immediate decision “to protect their infant’s life”, 8 were initially unsure when their infant was diagnosed in utero, and 4 were unsure when the infant was diagnosed after birth. Parents also experienced loss and other stressors.Conclusions:All parents of the infants diagnosed with hypoplastic left heart syndrome experienced intense loss and stressors. Physicians need to be sensitive to the needs and thinking of the parents when discussing treatment options before surgery. The nature of the relationship with the doctor at this time can support parents or be a further source of stress.