COVID-19 and Pediatric Cardiomyopathy

The Children's Cardiomyopathy Foundation (CCF) is committed to providing support and reliable information during the COVID-19 health crisis. This page provides relevant information about the coronavirus for parents who are concerned about the health impact of the virus on their diagnosed child. Information on this page will be updated periodically.

General Guidelines

The risk of this novel virus on children with cardiomyopathy is still largely unknown. While some children can get severely ill from the disease, most children with COVID-19 have mild or no symptoms. This is based on available research and feedback from leading children's hospitals and academic medical centers.

There have been reported cases of children with "pediatric multi-system inflammatory syndrome," which is believed to be linked to COVID-19. This condition continues to be studied and how it affects children. Infants under age 1 and children with certain underlying conditions may be more likely to be severely affected by COVID-19.

Family members should take all health precautions as outlined by the Centers for Disease Control and Prevention (CDC):

  • 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

On May 12, 2021, the CDC Advisory Committee on Immunization Practices (ACIP) endorsed the Pfizer/BioNTech COVID-19 vaccine for adolescents ages 12 to 15. The vaccine was tested in more than 2,000 children and resulted in a stronger immune response than in adults. For younger children, Pfizer-BioNTech is continuing with clinical testing on children ages 2-11 and anticipates seeking emergency authorization in September to administer the vaccine.

The American Academy of Pediatrics (AAP) has issued a policy statement which recommends vaccinating all children ages 12 and older and all family/household members as soon as possible. Younger adolescents will be able to get vaccinated at pediatrician offices, some pharmacies, and school-based clinics. Furthermore, the AAP supports giving standard immunizations at the same time as COVID-19 vaccines, particularly for children and teens who are behind on their immunizations.

Parents are advised to inform their pediatrician of their child’s vaccination if given outside of the doctor’s office to keep their child’s medical records updated. For any questions about the vaccine, parents are encouraged to call their healthcare team for guidance. For more information on the science behind the COVID-19 vaccine and how it works with the immune system to fight COVID-19, click here. Information is also available in Spanish. Additional information from the American Heart Association (AHA), AAP, and CDC are listed below.

Safe School Guidelines

Since the start of the pandemic, new guidelines have been developed to make the school learning environment safe. The American Academy of Pediatrics (AAP) has revised their school attendance guidelines, which includes physical distancing, face masks, symptom screens and testing, and cleaning/disinfecting. The new revised guidelines can be found here.

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 are different recommendations for returning to sports depending on the severity of the disease. According to the American Academy of Pediatrics (AAP) Interim Guidelines published December 2020, children who test positive for COVID-19 should wait 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 often 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. Recent articles about this topic are listed below:

Camp Attendance During COVID-19

The American Academy of Pediatrics has released revised guidelines for pediatricians and families to make informed decisions about sending children to overnight/sleep away or day camp this summer. View 2021 guidelines here.

National Institutes of Health (NIH) Collaborative Research Project

In March 2021, the National Institutes of Health launched a new research effort to understand how SARS-CoV-2, the virus that causes COVID-19, affects children. The research program, Collaboration to Assess Risk and Identify Long-term Outcomes for Children with COVID (CARING for Children with COVID), is investigating which children are at greater risk for SARS-CoV-2 infection, why symptoms vary among infected children, and how to identify children at risk for severe illness from SARS-CoV-2 infection. The program is led by the National Heart, Lung, and Blood Institute (NHLBI) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) in collaboration with the National Institute of Allergy and Infectious Diseases (NIAID). More information on the CARING for Children with COVID research effort can be found here.

NIH observational study of coronavirus infection and multisystem inflammatory syndrome in children begins

The National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, launched an observational study in December 2021 to evaluate the short- and long-term health outcomes of COVID-19 infection in children, including multisystem inflammatory syndrome. The Pediatric Research Immune Network on SARS-CoV-2 and MIS-C (PRISM) study will enroll at least 250 children and young adults ages 20 years or younger from diverse racial and ethnic backgrounds at approximately 20 sites nationwide. Results from the study are expected mid-2022.

Rare Diseases Clinical Research Network Survey

A survey by the National Institutes of Health Rare Disease Clinical Research Network was launched in May 2020 to find out how the COVID-19 pandemic is impacting individuals with rare diseases, their families, and caregivers. Preliminary survey results of the RDCRN COVID-19 can be found 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 well-being 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

Advanced Cardiac Therapies Improving Outcomes Network (ACTION)

American Academies of Pediatrics: Congenital Heart Public Health Consortium

National Institutes of Health

Coping Resources

American Academy of Pediatrics

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