In the spring of 2004, our son Neil was a centerfielder for the Assumption College Greyhounds. During an away game he experienced shortness of breath and dizziness after running the bases. This continued to the point where he could no longer play and begrudgingly Neil alerted the coach, who in turn asked a team trainer to check on him. The diagnosis at the time was Neil had suffered a panic attack.
That evening while riding on the bus back to school Neil telephoned me to tell me about the incident. Being Neil’s mom I did not believe that he had suffered a panic attack; his demeanor and overall personality were not consistent with this diagnosis. I immediately called a friend who is a paramedic and described what had happened. He told me to go get Neil and take him for a follow-up with a physician, stating this could be cardiac-related.
The following day Neil and I were at his pediatrician’s office for an exam. The doctor confirmed the diagnosis of a panic attack, and told us he was cleared to play baseball. However, the words of my friend impelled me to request cardiac testing. Due to my insistence the doctor agreed, but unfortunately was unsure where to send us, as Neil was too old to be seen by a pediatric cardiologist. I looked in the phone book, found a local cardiology office, and called to see what was required to get Neil an appointment. I was told he would need an EKG before they would see him. I then called RIH and was directed to bring him in; they would perform the test, and send the results to the cardiology office I had contacted. By the following week we received the news that Neil’s EKG was not normal, he was not to play baseball, and that further testing was needed. After months of tests Neil received the diagnosis of ARVD/C (Arrhythmogenic Right Ventricular Dysplasia/Cardiomyopathy). That summer Neil underwent surgery for the implantation of an ICD (Implantable Cardioverter Defibrillator), was placed on heart medication, and said goodbye to competitive sports.
After the shock and sadness of Neil’s diagnosis began to fade I felt determined to find a way to take this negative event and turn it into something positive. I got involved with the Heart Disease and Stroke Prevention Taskforce at the RI DOH, the HeartSafe Community Program, and became a CPR instructor. I subsequently went back to school to earn a degree in Health Services Administration and recently became an advocate for the American Heart Association. If my son, a seemingly healthy college athlete could have a potentially life threatening progressive heart disease that had gone undiagnosed throughout his childhood, then I knew there had to be others who could benefit from my sharing his story, as well as my willingness to educate others about CPR, the use of an AED, and heart health.
Neil recently earned his MBA, and is enjoying a career in supply chain management. He makes the most of everyday, knowing that although heart disease has impacted his life, he is one of the lucky ones who survived a cardiac event. Needless to say, our family is grateful to still have Neil with us.