By Becca Kalivas, RN, MS, Education Director, Conquering CHD
There is no doubt 2020 presented unknown and scary challenges for most of the world. The uncertainty continued throughout 2021 as well. For patients and families trying to navigate congenital heart disease (CHD), the pandemic presented extra challenges on top of the already trying journey of CHD.
A diagnosis of congenital heart disease can be scary and overwhelming, no matter when it happens. When a family receives a diagnosis of CHD, what starts as joy and excitement over the upcoming birth of their child is quickly replaced with grief and fear, with questions like “Will my child live a normal life?” “How do I find a care center for my baby?” “Where do I even begin to get more information?” swirling in their heads. For one family, this became their reality in 2020.
When Sara was 20 weeks pregnant, she learned that her child had a complex heart issue and would require immediate attention after birth. As the day of delivery grew closer, Sara’s worry about her unborn child’s health grew stronger. Due to the pandemic, Sara felt incredibly isolated and alone during this difficult time: no baby shower with friends and loved ones, she learned how to ”breathe during delivery” through a Zoom call, and then she learned that there would be no outside visitors allowed at the delivery. It would just be she and her husband.
1 in 100 newborns is born with congenital heart disease – making it the #1 most common birth defect – with nearly 40,000 infants born with CHD each year in the US. CHD is 30 times more common than cystic fibrosis and 50 times more common than childhood cancer. Chances are good someone you know was born with congenital heart disease. There is no cure for CHD. It is a lifelong disease requiring ongoing specialized care.
The diagnosis of CHD and the uncertainty and fear it brings are difficult at any time. Add in a global pandemic and it becomes even more so. Unfortunately, stories like Sara’s have not been isolated in the CHD community during the pandemic. CHD doesn’t stop or “shut down” during a pandemic just because the world does. Thankfully, neither do we.
At a time when most nonprofit organizations had to pause their work due to the spread of COVID-19, Conquering CHD got creative about reaching our patients and families in new ways. Despite countless hurdles, our organization and vast network of volunteers worked to meet the new challenges our patients and families were facing.
As of December 2021, Conquering CHD:
- Had launched four education campaigns addressing urgent community needs like COVID-19, diversity, equity, and CHD as a lifelong disease. We used virtual platforms like Zoom to reach patients and families with important information to help them manage their own care, in a way that made learning convenient and engaging.
- Distributed 3000 Conquering CHD Kits. We put resources directly into the hands of those who need it most: From a new mom who just found out her unborn child has CHD, or a toddler on their third surgery, to an adult who came back to the doctor for the first time in a decade. Our care packages offer essential resources, including tools to guide conversations with care teams, with a healthy dose of hope and support.
- Served CHD in local communities with 5000 volunteer hours in 18 states. We execute our mission through our 18 state chapters, who are the hands and feet of our organization. Our state chapter volunteers offer insight, social support, and other essential tools to make navigating the CHD journey a little bit easier. These volunteers found creative ways to reach patients and families throughout 2020 and into 2021, even meeting them in hospital parking lots to deliver resources and peer-to-peer support.
- Extended our outreach to touch 10.5 million lives through our multi-media activities. Our outreach activities didn’t stop in 2020 and they continue to help raise awareness and build compassion for the most common birth defect in order to help those who are living with it.
For families like Sara’s, our work is essential, bringing critical resources, comfort, and hope during difficult and stressful times.
In searching for support, Sara found Conquering CHD. We were able to get Sara a care package, letting her know she wasn’t alone. The kit also provided resources that helped answer a few important questions and inspire new questions she could ask her doctor. A follow-up phone call offered reassurance that there were other parents who had already had similar experiences and would travel this journey with her.
”For the first time since our diagnosis, my husband and I felt hope and like things might be okay for us. Having that connection and community available to us, albeit in unique ways like Zoom, was invaluable in our CHD journey.” Sara shares.
Sara’s bundle of joy joined the world, and despite difficult odds, is thriving today with the help of their care team and the resources, connection, and hope Sara received from Conquering CHD.
2020 brought trials and unforeseen complexities to most of our lives, but for those with complex healthcare needs impacted by the #1 most common birth defect, those trials and complexities were amplified in unimaginable ways. Through the resilience of our community, we were able to adjust our usual programs and support to truly meet families where they were. The last two years have shed a light on serious challenges with how CHD patients and their families access both information and care. We look forward to building on the unique digital and in-person opportunities developed throughout the pandemic as we continue to serve all families impacted by CHD. As we look toward 2022 and the future, we hope to continue the efforts we started in 2020, and expand our community, resources, and support even further through partnerships with AMCHP, state and local health departments, and community-based organizations to reach even more patients and families.
Global pandemic or not, we are here for patients with CHD and their families, across and beyond the lifespan. Together, we are Conquering CHD.