{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,1]],"date-time":"2026-09-01T02:23:49Z","timestamp":1788229429790,"version":"build-2803163510"},"reference-count":44,"publisher":"Cambridge University Press (CUP)","issue":"9","license":[{"start":{"date-parts":[[2025,8,29]],"date-time":"2025-08-29T00:00:00Z","timestamp":1756425600000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>Trisomy 21 is the most common chromosomal anomaly worldwide, and nearly half of the affected individuals are born with CHD, making cardiac complications a leading cause of morbidity and mortality in this population. Over the past century, the management of CHD in patients with Trisomy 21 has evolved dramatically, shaped by shifting societal attitudes, advances in diagnostic and surgical techniques, and landmark legal and ethical milestones. Historically, children with Trisomy 21 faced significant barriers to cardiac care, including delayed referrals and denial of surgical intervention, often rooted in discrimination rather than medical evidence. However, improvements in perioperative management and early surgical repair have led to survival outcomes for many forms of CHD that now approach those of the general population. Despite these advances, challenges persist, particularly in access to heart transplantation, where disparities in referral and eligibility remain. This review provides a historical overview of the evolution of CHD management in individuals with Trisomy 21, highlighting key medical, ethical, and societal developments that have shaped current standards of care.<\/jats:p>","DOI":"10.1017\/s1047951125109347","type":"journal-article","created":{"date-parts":[[2025,8,29]],"date-time":"2025-08-29T09:03:58Z","timestamp":1756458238000},"page":"1759-1765","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":2,"title":["A change of heart: the evolution of care for children with Trisomy 21 and CHD"],"prefix":"10.1017","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0009-0004-9107-4677","authenticated-orcid":false,"given":"Madeline","family":"Petrikas","sequence":"first","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sumin","family":"Choi","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Cavanaugh","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nevaeh","family":"Gomez","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cheyenne","family":"Ahamed","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Davi Freitas","family":"Tenorio","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Roderick","family":"Yang","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jiyong","family":"Moon","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"suffix":"III","given":"Charles D.","family":"Fraser","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charles D.","family":"Fraser","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Constantine D.","family":"Mavroudis","sequence":"additional","affiliation":[{"name":"Dell Medical School at the University of Texas at Austin"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2025,8,29]]},"reference":[{"key":"S1047951125109347_ref15","first-page":"29","article-title":"Down syndrome with congenital heart malformation","volume":"131","author":"Park","year":"1977","journal-title":"Am J Dis Child"},{"key":"S1047951125109347_ref41","doi-asserted-by":"publisher","DOI":"10.1016\/j.cger.2016.01.013"},{"key":"S1047951125109347_ref38","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2022.02.014"},{"key":"S1047951125109347_ref42","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-3476(89)80603-1"},{"key":"S1047951125109347_ref33","doi-asserted-by":"publisher","DOI":"10.1111\/chd.12823"},{"key":"S1047951125109347_ref29","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtcvs.2010.08.093"},{"key":"S1047951125109347_ref18","first-page":"68","article-title":"Unequal cardiac care for children with down\u2019s syndrome","volume":"139","author":"Sondheimer","year":"1985","journal-title":"Am J Dis Child"},{"key":"S1047951125109347_ref40","unstructured":"40. National Council on Disability, Organ transplant discrimination against people with disabilities: part of the bioethics and disability series. 2019. https:\/\/www.ncd.gov\/assets\/uploads\/reports\/2019\/ncd_organ_transplant_508.pdf."},{"key":"S1047951125109347_ref13","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2020.12.058"},{"key":"S1047951125109347_ref22","doi-asserted-by":"publisher","DOI":"10.1542\/peds.93.5.855"},{"key":"S1047951125109347_ref3","doi-asserted-by":"publisher","DOI":"10.1053\/j.semtcvs.2015.11.003"},{"key":"S1047951125109347_ref9","doi-asserted-by":"publisher","DOI":"10.1542\/peds.58.6.893"},{"key":"S1047951125109347_ref26","unstructured":"26. Surgery. Down syndrome | national down syndrome society (NDSS). Accessed April 26, 2025. https:\/\/ndss.org\/resources\/surgery-down-syndrome."},{"key":"S1047951125109347_ref7","unstructured":"7. Rep. Brademas J [D I 3. H.R.8070 - 93rd Congress (1973\u20131974): Rehabilitation Act of 1973. 1973. Accessed May 23, 2025. https:\/\/www.congress.gov\/bill\/93rd-congress\/house-bill\/8070."},{"key":"S1047951125109347_ref2","doi-asserted-by":"publisher","DOI":"10.1161\/JAHA.124.036214"},{"key":"S1047951125109347_ref24","first-page":"943","article-title":"Postoperative cardiac intensive care outcome for down syndrome children","volume":"26","author":"Kabbani","year":"2005","journal-title":"Saudi Med J"},{"key":"S1047951125109347_ref16","volume-title":"The Sanctity of Social Life: Physicians Treatment of Critically Ill Patients","author":"Crane","year":"1975"},{"key":"S1047951125109347_ref6","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2014-1739"},{"key":"S1047951125109347_ref17","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(85)92444-4"},{"key":"S1047951125109347_ref25","doi-asserted-by":"publisher","DOI":"10.1053\/j.sane.2006.05.001"},{"key":"S1047951125109347_ref14","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtcvs.2007.01.026"},{"key":"S1047951125109347_ref32","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2007.06.014"},{"key":"S1047951125109347_ref36","doi-asserted-by":"publisher","DOI":"10.1177\/2045894019866549"},{"key":"S1047951125109347_ref35","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0159005"},{"key":"S1047951125109347_ref43","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.320.7238.816"},{"key":"S1047951125109347_ref37","doi-asserted-by":"publisher","DOI":"10.1007\/s40119-021-00251-5"},{"key":"S1047951125109347_ref44","doi-asserted-by":"publisher","DOI":"10.1016\/j.healun.2018.01.1296"},{"key":"S1047951125109347_ref8","first-page":"201","article-title":"Reasonable accommodation under the Americans with disabilities act: the limitations of rehabilitation act precedent","volume":"14","author":"Lee","year":"1993","journal-title":"Berkeley J Emp and Lab L"},{"key":"S1047951125109347_ref27","doi-asserted-by":"publisher","DOI":"10.1002\/9781119791690"},{"key":"S1047951125109347_ref4","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e3181b2e34c"},{"key":"S1047951125109347_ref21","first-page":"7","article-title":"Down syndrome and congenital heart disease: perioperative planning and management","volume":"5","author":"Delany","year":"2021","journal-title":"J Congenit Cardiol"},{"key":"S1047951125109347_ref20","unstructured":"20. Fremon. \u201c We do not feel that patients with down syndrome are appropriate candidates for heart-lung transplantation.\u201d : these words were a death sentence for Sandra Jensen. And that, she decided, just wasn\u2019t going to happen. Los Angeles Times. 1996, Accessed May 23, 2025. https:\/\/www.latimes.com\/archives\/la-xpm-1996-04-14-tm-58423-story.html."},{"key":"S1047951125109347_ref34","doi-asserted-by":"publisher","DOI":"10.1016\/j.athoracsur.2015.11.047"},{"key":"S1047951125109347_ref12","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951104001052"},{"key":"S1047951125109347_ref10","doi-asserted-by":"publisher","DOI":"10.1542\/peds.61.2.331"},{"key":"S1047951125109347_ref30","doi-asserted-by":"publisher","DOI":"10.1053\/j.semtcvs.2020.06.037"},{"key":"S1047951125109347_ref39","doi-asserted-by":"publisher","DOI":"10.1016\/j.athoracsur.2020.10.014"},{"key":"S1047951125109347_ref28","doi-asserted-by":"publisher","DOI":"10.1111\/pan.14416"},{"key":"S1047951125109347_ref5","first-page":"309","article-title":"The end at the beginning","volume":"11","author":"White","year":"2011","journal-title":"Ochsner J"},{"key":"S1047951125109347_ref31","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2009-3245"},{"key":"S1047951125109347_ref11","doi-asserted-by":"publisher","DOI":"10.1136\/adc.81.2.151"},{"key":"S1047951125109347_ref1","doi-asserted-by":"publisher","DOI":"10.1136\/jech-2023-220638"},{"key":"S1047951125109347_ref23","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.122.059706"},{"key":"S1047951125109347_ref19","doi-asserted-by":"publisher","DOI":"10.1017\/S0963180115000572"}],"container-title":["Cardiology in the Young"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1047951125109347","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,3]],"date-time":"2025-10-03T11:56:28Z","timestamp":1759492588000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1047951125109347\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,8,29]]},"references-count":44,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2025,9]]}},"alternative-id":["S1047951125109347"],"URL":"https:\/\/doi.org\/10.1017\/s1047951125109347","relation":{},"ISSN":["1047-9511","1467-1107"],"issn-type":[{"value":"1047-9511","type":"print"},{"value":"1467-1107","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,8,29]]},"assertion":[{"value":"\u00a9 The Author(s), 2025. Published by Cambridge University Press","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (https:\/\/creativecommons.org\/licenses\/by\/4.0\/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.","name":"license","label":"License","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}},{"value":"This content has been made available to all.","name":"free","label":"Free to read"}]}}