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COVID-19 & CHD: Town Hall Wrap Up

Thank you to the patients and families who participated in our live Town Hall on June 16th, as part of our CHD Wise educational series. Read on for the summary and full video presentation.

CHD Wise is an educational series designed for patients and families, by patients and families. It is a regular opportunity for the community to engage with experts on specific topics. Courses are held virtually, some live and some recorded. For full program details, please visit our CHD Wise website.

Sponsored by Medtronic, the first event in our CHD Wise series was a live town hall on COVID-19 and CHD. Conquering CHD staff were joined by three physicians live, and one physician via email. Thank you to Dr. Nicolas Madsen, Dr. Matt Oster, and Dr. Ram Kumar Subramanyan for participating in this groundbreaking event!

The following questions were derived from over 200 submissions prior to the live town hall:

  • How does COVID-19 affect the heart muscle? Does it affect hearts with CHD differently?
  • How many positive COVID cases in patients with CHD are you aware of?
  • Are CHD patients truly in the “high risk for serious illness” category? Are there populations within the CHD community more at risk? Transplant patients? Single ventricle patients? Adult patients?
  • Are pediatric CHD patients at higher risk of contracting the systemic inflammatory disease MIS-C?
  • How do you explain to youth and teen patients their heart disease is difference than the heart disease they hear about in commercials about COVID-19?
  • What should families consider before sending their CHD children back to daycare? Camp? School in the Fall? Do these recommendations differ for any specific population of CHD patients?
  • How do I advocate for routine appointments (dental, well checks, etc.) if my care provider is not accepting “high risk patients” due to coronavirus?

You can watch the recording of the live town hall here:

Dr. Michelle Gurvitz, an adult congenital cardiologist at Boston Children’s Hospital, was on service during the live town hall. After reviewing the event, she addressed questions from teen and adult patients via email.

What is the general COVID risk for an otherwise healthy adult CHD patient? Is an adult Fontan patient at a higher risk than the average adult CHD patient? Are there specific adult CHD populations that are at higher risk?

Currently, there is little known about specific risk for adult CHD patients should they become infected with Covid-19.  The risk of becoming infected is probably no different than the general population but they may be at higher risk of complications.  There is not enough information available to identify which CHD patients are at higher risk.  Based on what we know of the viral infection, we anticipate that those with underlying lung disease, low oxygen saturations, heart failure, and clotting disorders may be at higher risk. Based on the general adult population data, older adults with coronary artery disease, diabetes and hypertension also seem to be at higher risk.  However, there is not enough information to say anything specifically yet regarding types of CHDs.

Do adult CHD patients need to socially isolate within their own homes/families? Additional precautions to consider? Working from home?

As far as what people can do to protect themselves and their family members is to follow the CDC recommendations and to speak specifically about your own risk with your primary care and congenital heart physicians.  Risk mitigation is very important including maintaining social distancing, avoiding crowds, wearing masks when appropriate and excellent hand hygiene.  Many adult patients have questions regarding returning to work and/or school.  As different states and cities have different rules and different risks at various times, this is best addressed with your local healthcare providers and will likely reflect the type of work and local risk in your area.

As providers, one of the biggest issues we have seen is adult patients delaying or avoiding healthcare during the pandemic and not coming in until an emergency or until they are much sicker than usual.  Hospitals and physician practices are taking great precautions to make virtual telehealth visits available for patients and to make in-person visits and testing as safe as possible. One of the most important messages from healthcare providers during this pandemic is not to lose touch with your healthcare team.  Please do not ignore your own care and symptoms out of fear of contracting Covid-19. If you are having symptoms or concerns, reach out to your healthcare team and they will work with you to find safe and appropriate care.

CHD Wise provides educational presentations each month for patients and families in the CHD community. If you have follow-up questions from any presentation, a topic you’d like to see us cover in the future, or are an expert willing to collaborate, we would love to hear from you. Email the CHD Wise team today.

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