title: Place, age, and mode of death of infants and children with hypoplastic left heart syndrome: implications for medical counselling, psychological counselling, and palliative care.
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.
authors.affiliation: Pediatric Intensive Care Unit, The Royal Children's Hospital and Department of Social Work, The University of Melbourne, Parkville, Victoria, Australia.
authors.forename: Annie M
authors.initials: AM
authors.lastname: Cantwell-Bartl
authors.forename: James
authors.initials: J
authors.lastname: Tibballs
mesh_terms: D000293:Adolescent; D017677:Age Distribution; D001601:Bereavement; D006348:Cardiac Surgical Procedures / Q000401:mortality; D002648:Child; D002675:Child, Preschool; D003376:Counseling; D003657:Decision Making; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000401:mortality* / Q000601:surgery / Q000628:therapy*; D007223:Infant; D007231:Infant, Newborn; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D012189:Retrospective Studies; D014739:Victoria / Q000453:epidemiology