{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T15:00:31Z","timestamp":1753887631103,"version":"3.41.2"},"reference-count":27,"publisher":"American Academy of Pediatrics (AAP)","issue":"2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2025,2,1]]},"abstract":"<jats:p>We present the case of a child born with hypoplastic left heart syndrome. After developing multiple complications following the first surgical stage (Norwood procedure), her parents decide not to proceed with the second stage (Glenn operation). Cardiac surgeons, pediatric intensivists, a psychologist, and a bioethicist analyze whether further surgical intervention is ethically obligatory. A cardiac surgeon believes that after getting beyond the difficulties of the first stage, the patient seems to be a reasonable candidate for the next procedure. He considers the intervention to be ethically permissible edging on ethically obligatory. The psychologist describes the emotional impact of traumatic experiences like the one experienced by this family. She analyses whether their decision is likely to be aligned with their values and explains the possible mechanisms that justify a decision not to continue with surgery. Physicians, a surgeon, and a bioethicist analyze the parents\u2019 perception of excessive suffering based on severe complications that were far worse than expected. They believe that, even if proceding with the Glenn operation is in the child\u2019s best interest, state intervention to require the surgery over the parents\u2019 objection is not justified.<\/jats:p>","DOI":"10.1542\/peds.2024-065655","type":"journal-article","created":{"date-parts":[[2025,1,15]],"date-time":"2025-01-15T17:34:25Z","timestamp":1736962465000},"source":"Crossref","is-referenced-by-count":0,"title":["A Controversial Clinical Case of a Child With Hypoplastic Left Heart Syndrome"],"prefix":"10.1542","volume":"155","author":[{"given":"Agust\u00edn","family":"Silberberg","sequence":"first","affiliation":[{"name":"1Department of Bioethics, Hospital Universitario Austral and Facultad de Ciencias Biom\u00e9dicas, Universidad Austral, Buenos Aires, Argentina"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Thomas","family":"Iolster","sequence":"additional","affiliation":[{"name":"2Pediatric Intensive Care Unit, Hospital Universitario Austral, Universidad Austral, Buenos Aires, Argentina"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christian","family":"Pizarro","sequence":"additional","affiliation":[{"name":"3Pediatric Cardiothoracic Surgery, Nemours Children\u2019s Cardiac Center, Wilmington, Deleware"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Adrienne","family":"Borschuk","sequence":"additional","affiliation":[{"name":"4Upstate Golisano Children\u2019s Hospital, Syracuse, New York"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Josefina","family":"Castro M\u00e9ndez","sequence":"additional","affiliation":[{"name":"5Pediatric Intensive Care Unit, Hospital Universitario Austral, Universidad Austral, Buenos Aires, Argentina"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christian","family":"Kreutzer","sequence":"additional","affiliation":[{"name":"6Pediatric Cardiovascular Surgery, Hospital Universitario Austral, Universidad Austral, Buenos Aires, Argentina"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Armand H.","family":"Matheny Antommaria","sequence":"additional","affiliation":[{"name":"7Cincinnati Children\u2019s Hospital Medical Center and Department of Pediatrics, College of Medicine, University of Cincinnati, Cincinnati, Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"417","published-online":{"date-parts":[[2025,1,15]]},"reference":[{"issue":"12","key":"2025070401562904100_r1","doi-asserted-by":"crossref","first-page":"1506","DOI":"10.1016\/S0002-9149(03)00412-0","article-title":"Choices physicians would make if they were the parents of a child with hypoplastic left heart syndrome","volume":"91","author":"Kon","year":"2003","journal-title":"Am J Cardiol."},{"issue":"1","key":"2025070401562904100_r2","doi-asserted-by":"crossref","first-page":"21","DOI":"10.1017\/S1047951117001159","article-title":"Children with hypoplastic left heart syndrome have lower quality of life than healthy 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