{"id":149,"date":"2014-08-21T18:50:24","date_gmt":"2014-08-21T18:50:24","guid":{"rendered":"http:\/\/wp-dev.its.vanderbilt.edu\/vanderbiltmedicine\/?p=149"},"modified":"2021-08-11T19:42:14","modified_gmt":"2021-08-11T19:42:14","slug":"childrens-hospital-gets-to-heart-of-boys-rare-disorder","status":"publish","type":"post","link":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/childrens-hospital-gets-to-heart-of-boys-rare-disorder\/","title":{"rendered":"Children\u2019s Hospital gets to heart of boy\u2019s rare disorder"},"content":{"rendered":"
\"Emily,<\/a>
Emily, Jason and Luke Reaves. Photo by Stephanie Fisher.<\/figcaption><\/figure>\n

Two-year-old Luke Reaves was diagnosed a year ago with\u00a0cardiomyopathy (a weakened heart muscle) caused by a rare hereditary metabolic disorder, Barth syndrome.<\/p>\n

With only about 200 reported cases of Barth worldwide, finding a hospital that understood a metabolic heart condition like Luke\u2019s was important for Emily and Jason Reaves, even if it meant traveling outside their hometown of Alabama. They learned that Monroe Carell Jr.\u00a0Children\u2019s Hospital at Vanderbilt cardiologists had expertise to treat children with these conditions, including Barth.<\/p>\n

\u201cMany pediatric heart institutes do not have pediatric cardiologists with the expertise. So, because Barth is a rare disease, it is possible to miss the diagnosis, as it is not often seen,\u201d said Vernat Exil, M.D., a pediatric cardiologist at Children\u2019s Hospital.<\/p>\n

After Luke\u2019s diagnosis, doctors managed his heart failure with medications. He celebrated his first birthday June 18, 2013, but as the weeks wore on his lethargy worsened and he became fussier. The Reaves then met with Exil who told them they should consider getting him worked up for heart transplant.<\/p>\n

Luke was admitted to Children\u2019s Hospital shortly after and listed for a heart on Aug. 2., 2013. On Jan. 28 Luke\u2019s parents got the call\u2014a heart was available.<\/p>\n

\u201cIf only we could find some way to make that decision (organ donation) easier for families,\u201d Emily Reaves said. \u201cLuke wouldn\u2019t be like this today if it weren\u2019t for that family who had to make a great decision in a horrible time in their life.\u201d<\/p>\n

To learn more about the Pediatric Heart Institute at Monroe Carell Jr. Children\u2019s Hospital at Vanderbilt, go to childrenshospital.vanderbilt.org<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

Two-year-old Luke Reaves was diagnosed a year ago with\u00a0cardiomyopathy (a weakened heart muscle) caused by a rare hereditary metabolic disorder, Barth syndrome. With only about 200 reported cases of Barth worldwide, finding a hospital that understood a metabolic heart condition like Luke\u2019s was important for Emily and Jason Reaves, even if it meant traveling outside…<\/p>\n","protected":false},"author":205,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"_links_to":"","_links_to_target":""},"categories":[11,22],"tags":[],"class_list":["post-149","post","type-post","status-publish","format-standard","hentry","category-vm-around-the-medical-center","category-vm-summer-2014"],"acf":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/pcDnub-2p","_links":{"self":[{"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/posts\/149","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/users\/205"}],"replies":[{"embeddable":true,"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/comments?post=149"}],"version-history":[{"count":1,"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/posts\/149\/revisions"}],"predecessor-version":[{"id":3196,"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/posts\/149\/revisions\/3196"}],"wp:attachment":[{"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/media?parent=149"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/categories?post=149"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/medschool.vanderbilt.edu\/vanderbilt-medicine\/wp-json\/wp\/v2\/tags?post=149"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}