It was like any other day when competitive soccer players Ava and Maci headed into a summer soccer clinic in August 2020. After some time off from travel sports during the COVID-19 pandemic, both were eager to restart their training before school, however, not long into the clinic, Ava started experiencing dizziness and felt faint.
A near 100-degree day, Ava and her mother Terry Manago of Washington D.C. first attributed her lightheadedness to the heat and dehydration. Having seen similar symptoms in other athletes, the clinic soccer coach recommended Ava get checked for a heart murmur.
“At first, I was doubtful, but now I do believe it was some sort of divine intervention. I feel like he saved all of our lives,” Terry reflects on the coach’s potentially lifesaving guidance.
After reflecting on the coach’s advice and remembering her mother-in-law, who was born with a hole in her heart and eventually developed congestive heart failure, Terry scheduled Ava an appointment with her pediatrician, which led to an electrocardiogram (EKG), echocardiogram (Echo) and magnetic resonance imaging (MRI). Ava’s tests were consistent with an abnormally fast heartbeat known as supraventricular tachycardia (SVT) and a congenital disease of the heart muscle known as left ventricular noncompaction cardiomyopathy (LVNC).
To determine if the SVT and LVNC were genetic, doctors performed an Echo and MRI on Ava’s immediate family, leading to Maci and her father being diagnosed with LVNC. The family is currently awaiting testing on genes commonly associated with cardiomyopathy to proactively manage the conditions.
For now, it’s “business as usual,” and Ava and Maci are cleared to return to full-contact sports. They will continue playing school and travel soccer, and Maci will also join her school’s swim team this year. Moving forward, they will see a cardiologist and repeat an Echo annually while monitoring their heart rate at home. Ava will take a beta blocker to control her heart rhythm.
“I feel like we are super lucky to find this out because information is power. The fact that we know all of this at 16 and 14 is the best blessing,” Terry said regarding what Ava and Maci’s medical team considers to be an “incidental finding.” However, to Terry, the finding is more than incidental. She feels it is through the vigilance, compassion and foresight of the clinic soccer coach that she and her family now have the knowledge to understand and monitor these conditions.
“I am so grateful to him. He isn’t a coach they work with on a regular basis. We were just working with him in the summer to get out of the house and get some exercise, but without him telling me that, we would have just been living our lives and not knowing,” Terry said. “We are where we are today because that coach cares about kids and their physical and mental health – not just winning.”
This year, Terry, Ava and Maci are participating in the American Heart Association’s 2021 Greater Washington Region Heart Walk and are most looking forward to sharing their story to advocate for the AHA’s mission – to be a relentless force for a world of longer, healthier lives.
Maci shared she is excited to participate and hopes to connect with other survivors because she’s “looking forward to seeing how they continue to live their lives and seeing that although we all have different health challenges, we’re working toward an overarching goal” – to end heart disease and stroke.
The Heart Walk will take place on Saturday, November 6, 2021 and is a one-of-a-kind opportunity to get moving and join friends, family and colleagues in raising funds toward research, advocacy and promoting better health in our community.
“The past year has shown us the importance of coming together – even virtually or from a distance – to support a common cause,” said Cynthia Cifuentes, 2021 Heart Challenge Chair and Vice President Brand, Communications and Community Engagement at Kaiser Permanente. “Kaiser Permanente is a healthcare delivery system fundamentally rooted in preventative medicine and promoting healthy lifestyle choices in our community, including heart health. We are honored to support the 2021 Greater Washington Heart Walk and invite you to join us as we take steps toward better heart health for all in our community.”
To register, visit GreaterWashingtonHeartWalk.org. From there, participants can stay up to date by downloading the Heart Walk mobile app and encourage friends and family to join in via e-mail or on social media. All walkers are encouraged to connect and share on social media using, #DCHeartWalk to bring the entire community together in support of the American Heart Association. Register today to stay informed as plans and community guidelines evolve. For questions, email [email protected].