All parents of surviving infants with hypoplastic left heart syndrome in PICU, irrespective of timing of diagnosis, experienced numerous stresses and losses, and the majority exhibited clinical levels of traumatic stress. Receiving the diagnosis itself is very traumatic and is compounded by the environment of the PICU which alienates parents from their infants and interferes with parent-infant bonding. Parental adaptation to this situation can be assisted by staff.

Approximately half of parents chose non-surgical management (compassionate care) of their infant if the diagnosis was post-natal. Although most parents of infants born with a prenatal diagnosis of HLHS chose surgical management of their infant, this is the likely influence of termination of pregnancy for this condition. Lack of prenatal diagnosis compromised fitness for surgery.

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.

This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents.

subi d'operation sont morts ainsi : 68 aI'age de moyen de 3 jours; 57 (79 %) aux soins intensifs, 3 (4 %) dans l'unite de cardiologie et 12 (17 %) sont morts ailleurs. En conclusion on propose certaines strategies afin de pouvoir aider les parents et Ie personnel lors du diagnostic et, par la suite, avant et apres la mort de I'enfant. Abstract / A review of outcomes of hypoplastic left heart syndrome at a pediatric hospital 1983-2004 identified 154 deaths among 206 children (75%). Of 134 surgically treated, 82 (62%) died: 68 (83%) in intensive care, six (7%) in the operating theatre, three (4%) during transport from home, two (2%) on the cardiac ward, one (1 %) at home, one (1 %) in the emergency department, and one (1 %) elsewhere. Seventy died after stage one Norwood surgery (median age: 13 days), three died after second stage surgery (ages: 3, 4, and 20 months), two died after third stage surgery (ages: 1.2 and 3.5 years), two died after heart transplantation (ages: 4.6 and 15 years), and five died after non-Norwood surgery. All 72 infants treated without surgery died: 68 died at a median age 3 days; 57 (79%) in intensive care, three (4%) on the ward, and 12 (17%) elsewhere. Discussion involves strategies to support parents and staff at diagnosis, and before and after a child's death.