{"id":254,"date":"2018-09-06T11:32:51","date_gmt":"2018-09-06T11:32:51","guid":{"rendered":"https:\/\/genesis-foundation.net\/blog\/?p=254"},"modified":"2021-12-16T09:27:26","modified_gmt":"2021-12-16T09:27:26","slug":"fighting-a-congenital-heart-defect-a-heart-moms-experience","status":"publish","type":"post","link":"https:\/\/www.genesis-foundation.net\/blog\/fighting-a-congenital-heart-defect-a-heart-moms-experience\/","title":{"rendered":"Fighting a Congenital Heart Defect: A heart mom&#8217;s experience"},"content":{"rendered":"<div class=\"story-col-12\">\n<div class=\"story-col-12\">\n<p style=\"text-align: justify;\">\u201cYour son has a heart defect. There\u2019s no way we can treat him here. Where do you want to go?\u201d<\/p>\n<\/div>\n<div class=\"story-col-12\" style=\"text-align: justify;\">\n<p style=\"text-align: center;\"><img decoding=\"async\" class=\"aligncenter\" style=\"width: inherit;\" src=\"https:\/\/genesis-foundation.net\/blog\/wp-content\/uploads\/2019\/12\/monImgHeart2.jpg\" \/><\/p>\n<\/div>\n<div class=\"story-col-12\" style=\"text-align: justify;\">\n<p>Those were the words that changed my life. It was October 1994 and my son was in congestive heart failure. I had had 3 ultrasounds, and nothing showed a problem with the heart, but this was in the 1990s and the images back then were not as good as they are today. For the first 10 days of my son\u2019s life I had taken him back to the hospital to Newborn Follow-Up Care. Nurses applied labels like \u201cnewborn breathing,\u201d \u201cbreastmilk jaundice\u201d and \u201cpetite like you\u201d to explain his tachypnea, yellow appearance and the fact that he wasn\u2019t gaining weight.<\/p>\n<p>Before I knew it, I was in an ambulance with my 2-month-old son. We were headed to San Antonio, Texas where I would discover the name of my son\u2019s birth defect. Alexander was born with hypoplastic left heart syndrome \u2013 a potentially fatal heart defect. The fact that he hadn\u2019t died already was a miracle. With such <a href=\"https:\/\/www.genesis-foundation.net\/about-congenital-heart-defects\" target=\"_blank\" rel=\"noopener noreferrer\">heart disorders children<\/a> usually never survive, but he was a fighter.<\/p>\n<p>After more tests, the doctors were ready to meet with us. What they told me was stunning. How could my baby be alive with so many problems with his heart? I wanted to run out of the room, scoop my baby in my arms and shield him from the uncertain future ahead. Instead I listened to doctors tell us the seriousness of the situation and how, if Alexander were their son, they would take him home to love him for what little time he had left. Four doctors were in agreement on the course we should take.<\/p>\n<p>That wasn\u2019t acceptable to my husband and me. We didn\u2019t care what they had to do, we just wanted them to save our son. Thus, began our journey with congenital heart defects.<\/p>\n<p>Alexander amazed the doctors. He had the fastest recovery time of any other previous HLHS baby. He was discharged just one week after his surgery. We had to stay in San Antonio for two weeks of follow-up appointments. Alexander had another open-heart surgery \u2013 which left him with a Fontan heart \u2013 eight months later.<\/p>\n<p>I found myself in a precarious situation. I had never cared for a medically fragile child before. I didn\u2019t understand the words the doctors were using or the tests he needed. The surgical procedures were also unfamiliar to me. Therefore, I decided I would have to educate myself so that I could be a strong advocate for my son.<\/p>\n<p>Between Alexander\u2019s first and second surgery I started to put together a book about his heart condition. Unable to find a publisher I self-published the book. Meanwhile, I had sent a letter to a nursing journal my husband subscribed to and the letter was featured as an End Note. I had always wanted to be a writer but I never thought the first piece I would have published would be in a nursing journal nor that the first book I would write would be about a rare heart condition.<\/p>\n<\/div>\n<div class=\"story-col-12\" style=\"text-align: justify;\">\n<p style=\"text-align: center;\"><img decoding=\"async\" class=\"aligncenter\" style=\"width: inherit;\" src=\"https:\/\/genesis-foundation.net\/blog\/wp-content\/uploads\/2019\/12\/monImgHeart3.jpg\" \/><\/p>\n<\/div>\n<div class=\"story-col-12\" style=\"text-align: justify;\">\n<p>Since then I have gone on to create websites, write more books and enter the world of public speaking. I have spoken at conferences all over North America. I have sold books to people on every continent except Antarctica. Suffering from Heart Disorders, children who are diagnosed have no geographical boundaries. It is a worldwide problem.<\/p>\n<\/div>\n<div class=\"story-col-12\" style=\"text-align: justify;\">\n<p style=\"text-align: center;\"><img decoding=\"async\" class=\"aligncenter\" style=\"width: inherit;\" src=\"https:\/\/genesis-foundation.net\/blog\/wp-content\/uploads\/2019\/12\/heartUnitMomImg8.jpg\" \/><\/p>\n<\/div>\n<div class=\"story-col-12\" style=\"text-align: justify;\">\n<p>I have also started a nonprofit organization called \u201cHearts Unite the Globe\u201d (HUG). The mission of the nonprofit is to empower, educate and enrich the lives of members of the congenital heart defect community. The website is a clearinghouse of information for CHD members but perhaps the most impactful activity HUG currently engages in is the production of podcasts for the CHD and bereaved communities.<\/p>\n<p>The path I have traveled upon has not been easy; however, I have met many wonderful people along the way. My son has grown into a strong, independent man who is a pharmacy tech at our local hospital. Through my publishing company and nonprofit, I have had the good fortune to reach out to others and to make a difference. As bad as CHDs can be, I feel that I have been extremely blessed and look forward to the day when we can find a cure for congenital heart defects.<\/p>\n<\/div>\n<div class=\"story-col-12\" style=\"text-align: justify;\">\n<p style=\"text-align: center;\"><img decoding=\"async\" class=\"aligncenter\" style=\"width: inherit;\" src=\"https:\/\/genesis-foundation.net\/blog\/wp-content\/uploads\/2019\/12\/hugMomImg4.jpg\" \/><\/p>\n<\/div>\n<div class=\"story-col-12\">\n<p style=\"text-align: justify;\">If you want to read and learn more about HUG, you can visit <a href=\"http:\/\/www.heartsunitetheglobe.com\/\" target=\"_blank\" rel=\"noopener noreferrer\">www.heartsunitetheglobe.com<\/a><\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>\u201cYour son has a heart defect. There\u2019s no way we can treat him here. Where do you want to go?\u201d Those were the words that changed my life. It was October 1994 and my son was in congestive heart failure. I had had 3 ultrasounds, and nothing showed a problem with the heart, but this [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":255,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-254","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Fighting a Congenital Heart Defect: A heart mom&#039;s experience - Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.genesis-foundation.net\/blog\/fighting-a-congenital-heart-defect-a-heart-moms-experience\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Fighting a Congenital Heart Defect: A heart mom&#039;s experience - Blog\" \/>\n<meta property=\"og:description\" content=\"\u201cYour son has a heart defect. 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