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We understand that caring for a sick child can be overwhelming, and hearing the diagnosis that your child has hypoplastic left heart syndrome (HLHS) is difficult. We are here to support your child and family through your journey with surgery, recovery and the renewed hope for a long, happy life.
We want to help you answer as many questions as possible. Our series of connecting families who are newly diagnosed with hypoplastic left heart syndrome (HLHS) with "veteran" families who have undergone the surgical procedures will provide you with support and relatable stories throughout your process.
The resources below will also provide support by offering a variety of information that can help answer questions, provide further insight and be a source of comfort. Discover the many tools other families have found helpful.
American Heart Association
The American Heart Association has important information about heart disease and how far we have come with medical advances for cardiac care. They provide public health education to improve the lives of all Americans and help them understand the importance of living a healthy lifestyle. Founded by six cardiologists in 1924, the American Heart Association is the nation's oldest and largest voluntary organization dedicated to fighting heart disease. The Denver American Heart Association office also has a variety of educational information, research and online tools. You can also get involved by volunteering at events or contributing to their online community.
Pediatric Congenital Heart Association
The mission of this heart-felt organization is to "Conquer Congenital Heart Disease." The Pediatric Congenital Heart Association provides helpful information, educational tools and facts about congenital heart disease. They have an extensive research section about how they are working toward reaching their mission. Becoming a part of their advocacy program will connect you with other heart patients, doctors, researchers and lawmakers committed to conquering congenital heart disease. You can also read stories from other families who have children with a heart defect and share your own story on their website as well. Telling your story is often part of the healing process.
Cardiac Kids Group at Children's Hospital Colorado
Cardiac Kids is a healing group put together by volunteers to support one another through times of need. This group provides a new and helpful perspective on what it's like to manage a congenital heart disease. Many of these volunteers are former patients or parents of children treated here. Being a part of this group has helped families share stories and get assistance through the healing process. You can get involved in the activities and meet-and-greet events that are held throughout the year. Weekend conferences are also held every fall and are open to the public. Learn more about Cardiac Kids as well as the Cardiac Kids: Parents' Resource Guide and Journal that the group distributes.
Congenital Heart Information Network
The Congenital Heart Information Network is a national organization that delivers reliable information, resources, advocacy, financial assistance and support for families and adults. You will find up-to-date congenital heart disease news and related stories, as well as information about joining email support groups. Also, check out their Facebook page to see what is being done in the medical field to help combat congenital heart disease, and read other stories that will inspire and encourage you through your own battle.
Little Hearts provides support, education, resources, and networking to families whose lives have been affected by congenital heart defects. Along with printed information to help educate and provide awareness, Little Hearts also holds meetings where families can have discussions, share ideas, get support and give help to other families just starting on the journey. They organize events like picnics and awareness day activities and have different types of support services including a discussion board, fundraising ideas, email group and parent matching program.
Cardiac Neurodevelopmental Outcome Collaborative
This nonprofit organization was created to provide neurodevelopmental and psychosocial services for individuals with congenital heart defects and their families. Cardiac Neurodevelopmental Outcome Collaborative's mission is to be a multidisciplinary group of healthcare professionals, who work with families in the areas of neurodevelopment. By visiting their website, you will learn about their research, quality improvements and clinical care program.
Managing a condition like HLHS can be emotional. That is why we are sharing other families' experiences to guide you through your journey and help you realize you are not alone.
See our list of questions you might forget, or not even know to ask, your doctor.
Also, check out one mom's list of tips and wisdom from her HLHS experience.