COVID-19 and Pediatric Cardiomyopathy

In response to the coronavirus COVID-19 crisis, many families affected by cardiomyopathy are concerned about the health of their children and are taking special precautions to protect the health of every family member. The Children's Cardiomyopathy Foundation (CCF) is committed to providing support and reliable information during this time of crisis.

General Guidelines

We are still learning about the risk of this novel virus to children with cardiomyopathy. Based on available research and feedback from leading children's hospitals and academic medical centers, the coronavirus does not seem to affect children as seriously as adults. There have been a few reported cases of children with "pediatric multi-system inflammatory syndrome," which is believed to be linked to COVID-19. This condition appears to be rare and needs to be studied more in depth.

While most children with COVID-19 may have no or mild symptoms, it is not known whether children with heart disease or children with heart transplants are at an increased risk. Therefore, family members should continue to take all health precautions as outlined by the Centers for Disease Control and Prevention (CDC). Recommendations include:

  • Seek reputable sources of information on COVID-19. Trustworthy resources are listed below.
  • Speak to your/your child's cardiologist for medical advice specific to your child and family.
  • Prevent transmission: avoid touching your face (eyes, nose, mouth), wash your hands frequently for 20 seconds with warm water and antibacterial soap, and clean and disinfect frequently touched surfaces.
  • Practice social distancing: avoid unnecessary travel and high traffic public places or gatherings with large numbers of people.
  • Avoid close contact with people who may seem sick. Practice covering coughs and sneezes with a tissue or use the inside of your elbow.
  • Use a mask or face covering as directed by your state's health department/Centers for Disease Control.

CCF Webinars on COVID-19

Research Study Update: Psychological Stress in Pediatric Cardiac Patients and Caregivers During COVID-19
Melissa Cousino, PhD & Kurt Schumacher, MD
University of Michigan Congenital Heart Center
C.S. Mott Children’s Hospital
August 19, 2020
View recording

COVID-19 Updates for Cardiomyopathy Families
Daphne Hsu, M.D., Division Chief of Pediatric Cardiology
Neha Bansal, M.D., Assistant Professor of Pediatrics
Children's Hospital at Montefiore
June 4, 2020
View recording

Emotional Considerations for Pediatric Cardiomyopathy Families During COVID-19 and Beyond
Debra Lefkowitz, PsyD., Assistant Professor of Clinical Psychology in Psychiatry
Children’s Hospital of Philadelphia
May 13, 2020
View recording

COVID-19 and Pediatric Cardiomyopathy: Information and Updates
Daphne Hsu, M.D., Division Chief of Pediatric Cardiology
Margaret Aldrich, M.D., Director of Infection Control
Children's Hospital at Montefiore
March 31, 2020
View recording

COVID-19 Vaccine

The recent emergency use authorization (EUA) of COVID-19 vaccines raises questions from parents about the vaccine’s safety and effectiveness in children. To date, neither of the authorized COVID-19 vaccines from Pfizer or Moderna are approved for children under the age of 16. The Centers for Disease Control (CDC) has not issued vaccine guidelines for children under the age of 16 and will not be able to until clinical testing can be completed on young children. The timeline for results is unclear, but the American Academy of Pediatrics estimates that a vaccine potentially may be available for certain age groups before the 2021-22 school year.

Since there are still many unknowns about that status of COVID-19 vaccines, it is important to obtain information from reputable sources. It is recommended that you speak to your or your child’s primary care provider and/or cardiology team for guidance. Since information is still developing, the following resources should be checked for updates:

Managing COVID-19: Back to School Guidelines

The Children’s Cardiomyopathy Foundation (CCF) has prepared guidelines for pediatric cardiomyopathy families to address back to school considerations during COVID-19 based on recommendations from Centers for Disease Control (CDC), the Prevention and the Pediatric Infectious Diseases Society, and the American Academy of Pediatrics. View PDF

Sports Participation after COVID-19 Infection

If your child has been diagnosed with COVID-19, there may be questions regarding a safe return to sports. Because research is still being conducted on the link between COVID-19 and myocarditis, there may be different recommendations on returning to sports based on the severity of the disease. According to the December 2020 American Academy of Pediatrics (AAP) Interim Guidelines, children who test positive for COVID-19 should be cleared by their physician and wait at least 10 days after their symptoms have resolved before returning to sports. Some children, depending on their age and the severity of their illness, will need additional cardiac testing before being cleared to play.

It is important to note that children diagnosed with cardiomyopathy are usually advised to avoid participation in competitive sports. While some recreational sports may be permissible, any sporting activity should be cleared by your child's medical team prior to participation. Specific guidelines should be discussed with your child’s medical team.

AAP COVID-19 Interim Guidance: Return to Sports

Returning to Play after Coronavirus Infection: A Perspective from Pediatric Cardiologists

Resumption of Athletic Activities in Pediatric Patients Following COVID-19 Infection

COVID-19 Survey for Pediatric Cardiomyopathy Families

The Children's Cardiomyopathy Foundation (CCF) and its medical advisors have developed a 5-minute survey to learn about who is being impacted in the pediatric cardiomyopathy community and to understand the severity of the impact of COVID-19.

Families are encouraged to take the survey if their child meets the following two criteria:

  • Is diagnosed with cardiomyopathy (includes children who have received a transplant)
  • Has experienced symptoms of COVID-19 in the last three months

Survey findings will be shared with physicians to assist them with developing COVID-19 screening and treatment guidelines. The survey is anonymous, and families are encouraged to complete the survey online.

A report of current findings can be found on CCF Connect. New data will be analyzed as it becomes available.

National Institutes of Health Study

It was announced on May 4, 2020 that the National Institutes of Health (NIH) is launching a national study, to determine the infection rate of COVID-19 in children and how the disease manifests. The Human Epidemiology and Response to SARS-CoV-2 (HEROS) study will recruit 6,000 children from 2,000 families in 11 cities across the U.S. Children and their families enrolled in the study will be followed for six months to understand who becomes infected and who develops symptoms. View news release.

Rare Diseases Clinical Research Network Survey

A new online survey launched by the National Institutes of Health supported Rare Disease Clinical Research Network aims to find out how the COVID-19 pandemic is impacting individuals with rare diseases, their families and caregivers. Results will help shed light on the needs of people with rare disease during the pandemic. For more information on the RDCRN COVID-19 survey, including how to participate, click here.

Psychological Stress in Pediatric and Adult Congenital Heart Disease Patients and Caregivers During the COVID-19 Pandemic Study

Researchers at the University of Michigan have studied the impact of the COVID-19 pandemic on the wellbeing of pediatric and young adult heart disease patients and their caregivers. This study helped inform the delivery and prioritization of mental health and support services during the early phase of the COVID-19 outbreak. Preliminary results of the study can be viewed here and the final abstract of the study here.

COVID-19 Information and Resources

Centers for Disease Control and Prevention

American Heart Association

American College of Cardiology

Medications and COVID-19

Advanced Cardiac Therapies Improving Outcomes Network (ACTION)

American Academies of Pediatrics: Congenital Heart Public Health Consortium

American Academy of Pediatrics: Parenting Website

National Institutes of Health

Coping Resources

Centers for Disease Control and Prevention: Stress and Coping

Centers for Disease Control and Prevention: Helping Children Cope with Emergencies

Covibook: Coloring Book for Kids

Mental Health and COVID-19

National Alliance on Mental Health: COVID 19 Resource and Information Guide

This page will be updated as more information and resources become available.

CCF also regularly updates a COVID-19 forum with news updates, research findings, and additional resource links. The forum is located on CCF Connect, CCF's private online community for registered members. To register with CCF, please click here.