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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.
The resources below offer a variety of information that can help answer questions, provide further insight, be a source of comfort and know what to expect. Discover the many tools other families have found helpful.
Finding out your child has hypoplastic left heart syndrome (HLHS), and learning how to manage it, can be overwhelming. It's important to understand the condition, communicate your concerns, recognize your options and know what questions to ask your doctor.
Karla, a mom whose 3-year-old son has HLHS, knew how important it was to keep a running list of questions for each appointment so she would remember what to ask. She shares her list of HLHS questions that parents of newly-diagnosed children might forget - or not even know - to ask.
Download the questions (.pdf).
Karla and Derick's son was diagnosed with hypoplastic left heart syndrome (HLHS) before he was born. This meant that after his birth, he would need three cardiac surgeries to help fix his heart defect.
Throughout this experience, Karla found ways to work through the process. For new parents, she shares her own list of tips for handling your child's surgeries, as well as some words of wisdom from her own journey.
Download Karla's HLHS tips (.pdf).
The Pediatric Congenital Heart Association (PCHA) compiled a list of important questions to ask your child's cardiac care team. Read these questions – and our answers – to help you make decisions about the care of your child.
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.
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 is a support group for families of patients with HLHS and other heart conditions to help 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.
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.
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.
We want to help you answer as many questions as possible. Watch our Connection Journey video series on HLHS to see how one family comforts another through hypoplastic left heart syndrome – from diagnosis to treatment to life after.