title: Dying at 23 with 1p36 deletion syndrome: Laura's family story.
abstract: Laura was unusual. She had always been different and at times difficult. She was born with a genetic disorder, diagnosed as 1p36 deletion syndrome when she was 21 years old. At 23 she suffered her first cardiac arrest at home and entered the hospital system for the first time apart from infancy. After initially appearing to do well, she suffered a second cardiac arrest 10 weeks after admission. This was followed by an irreversible deterioration and she died 14 weeks after admission. We her family had been with her throughout her traumatic experience. This is our story.
authors.affiliation: Emmanuel College, Melbourne, Victoria, Australia.
authors.forename: P A
authors.initials: PA
authors.lastname: Tandy
mesh_terms: D001293:Attitude to Death; D002872:Chromosome Deletion; D025063:Chromosome Disorders / Q000235:genetics / Q000451:nursing / Q000523:psychology*; D002878:Chromosomes, Human, Pair 1 / Q000235:genetics* / Q000648:ultrastructure; D034462:Dissent and Disputes; D004644:Emotions; D005260:Female; D006323:Heart Arrest / Q000209:etiology / Q000451:nursing; D006757:Hospital Units; D006760:Hospitalization; D006801:Humans; D007362:Intensive Care Units; D010166:Palliative Care; D018907:Privacy; D011368:Professional-Family Relations; D013577:Syndrome; D013727:Terminal Care; D014342:Truth Disclosure; D055815:Young Adult
keywords: 1p36 deletion syndrome; ICU; family care