{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T04:18:12Z","timestamp":1789532292357,"version":"build-2803163510"},"reference-count":10,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2013,10,17]],"date-time":"2013-10-17T00:00:00Z","timestamp":1381968000000},"content-version":"vor","delay-in-days":16,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Paediatrics Child Health"],"published-print":{"date-parts":[[2013,10]]},"abstract":"<jats:sec><jats:title>Abstract<\/jats:title><jats:p>We report the progress of an 8\u2010year\u2010old child with spinal muscular atrophy (<jats:styled-content style=\"fixed-case\">SMA<\/jats:styled-content>) type 1. The parents elected in infancy that the child should be on long\u2010term ventilation, but all attempts to establish this care at home have failed, so the child remains ventilated in the hospital. The leader of the long\u2010term ventilation team reports on the child's progress and describes a week in the child's life. Two paediatricians argue that the benefits of long\u2010term ventilation have not and do not compensate the child for the burdens imposed on her by this treatment and explain why they would not support the withdrawal of long\u2010term ventilation now. They argue that long\u2010term ventilation might have been avoided by applying to a court of law when the child was an infant. An ethicist discusses ethical aspects of decision\u2010making in <jats:styled-content style=\"fixed-case\">SMA<\/jats:styled-content> type 1.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jpc.12386","type":"journal-article","created":{"date-parts":[[2013,10,17]],"date-time":"2013-10-17T08:44:52Z","timestamp":1381999492000},"page":"807-812","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":30,"title":["Spinal muscular atrophy type I: Do the benefits of ventilation compensate for its burdens?"],"prefix":"10.1111","volume":"49","author":[{"given":"Kelly","family":"Gray","sequence":"first","affiliation":[{"name":"Children's Hospital at Westmead  Westmead Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Isaacs","sequence":"additional","affiliation":[{"name":"Children's Hospital at Westmead  Westmead Australia"},{"name":"University of Sydney  Sydney Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Henry A","family":"Kilham","sequence":"additional","affiliation":[{"name":"Children's Hospital at Westmead  Westmead Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernadette","family":"Tobin","sequence":"additional","affiliation":[{"name":"Australian Catholic University  Sydney Australia"},{"name":"Plunkett Centre, St Vincent's Hospital  Darlinghurst New South Wales Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2013,10,17]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD006281.pub4"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2012.05.067"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1097\/00002060-200302000-00009"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1440-1754.2007.01052.x"},{"key":"e_1_2_10_6_1","unstructured":"An NHS TrustvMB and others EWHC 507 (Fam) (2006)."},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1440-1754.2007.01197.x"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1378\/chest.126.3.831"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-6-71"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/jpc.12291"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/adc.88.10.848"}],"container-title":["Journal of Paediatrics and Child Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjpc.12386","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjpc.12386","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jpc.12386","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,1]],"date-time":"2023-10-01T13:33:47Z","timestamp":1696167227000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jpc.12386"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2013,10]]},"references-count":10,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2013,10]]}},"alternative-id":["10.1111\/jpc.12386"],"URL":"https:\/\/doi.org\/10.1111\/jpc.12386","archive":["Portico"],"relation":{},"ISSN":["1034-4810","1440-1754"],"issn-type":[{"value":"1034-4810","type":"print"},{"value":"1440-1754","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,10]]},"assertion":[{"value":"2013-10-17","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}