COVID-19 Resources for Hypoplastic Left Heart Syndrome (HLHS) Patients, Providers, and Families
As the global coronavirus disease 2019 (COVID-19) continues to spread, many HLHS patients, providers, and their families have questions about the impact the virus may have on their lives, care, and wellbeing. While NPC-QIC does not provide direct medical guidance for patients, we do aim to connect people for learning and the spread of reliable health information. With this in mind, we will continue to update the following resources to help you and your family better understand COVID-19.
COVID-19 Research Explained:
- The Research Explained: COVID-19 Special Report summarizes select research articles with the most valuable information on COVID-19 to date in easy-to-read language with charts and graphics to explain important concepts.
- Advanced Cardiac Therapies Improving Outcomes Network (ACTION) has a robust collection of information for parents, caregivers, patients, and families.
- American Academy of Pediatrics (AAP) hosted this webinar featuring leaders from around the world discussing what is known about COVID-19 in pediatric cardiac patients, the impact on heart centers, outpatient practices, and more.
- The British Congenital Cardiac Association (BCCA) released a statement on March 18 outlining its advice for CHD patients with COVID-19.
- Cardiac Networks United (CNU) has an extensive page of resources, including links to videos, scientific summaries, guides for how to talk to kids about COVID-19, and more.
- The Cardiac Neurodevelopmental Outcome Collaborative (CNOC) has rounded up resources for how to cope with stress and worrying during COVID-19.
- Centers for Disease Control and Prevention (CDC) provides general information on COVID-19, including number of cases, symptoms, prevention, travel alerts, and community resources.
- CHD Chat for Teens and Young Adults is a private Facebook group for CHDers between the ages of 13 and 25.
- Children’s Heart Foundation Q & A on COVID-19 and CHD with Dr. Costello and Dr. Romano
- Children’s Mercy Hospital specialists worked with Bazillion Pictures, Inc. to produce this video on relaxed belly breathing to help younger children calm their minds and bodies.
- Children’s Mercy Kansas City outlines its process for telemedicine with cardiology and interstage patients. (See secondary reference document here.)
- The Congenital Heart Public Health Consortium (CHPHC) has released a fact sheet on COVID-19 and how it can affect those with congenital heart disease.
- The Harvard Business Review published an article on COVID-19 and grief.
- HealthyChildren by the American Academy of Pediatrics (AAP) provides general information on COVID-19, including resources on talking with children about the virus, dealing with school and childcare closings, and activity suggestions.
- The Heart Failure Society of America, American College of Cardiology, and American Heart Association issued a joint statement March 17 outlining recommendations for the use of ACE-inhibitors and ARBs in patients with COVID-19.
- Nemours speech pathologists created this video on belly breathing for older children, teens, and adults.
- Sisters by Heart Video on COVID-19 for families with Dr. Gail Wright
- Sisters by Heart Video on resilience and stress management during COVID-19
- UC Berkeley’s The Greater Good Institute features a wealth of article and resources related to COVID-19.
- University of Michigan Health's guide for how to talk to kids about COVID-19
- World Health Organization (WHO) provides general information on COVID-19 through a global lens.
Please be advised: Anyone seeking specific medical guidance on the novel coronavirus and its effect on their health should communicate directly with their individual care team.