Seventeen-year-old Abby Hack is one of approximately 300 patients with pacemakers or Implantable Cardioverter Defibrillators (ICDs) followed each year by the specialists at Lurie Children’s Heart Center. Abby writes about her path to becoming an advocate for children and adolescents with these devices.
“What’s that weird mark on your shoulder?” asked Ella, a girl I was babysitting. I felt an instinctual need to cover up the thick pale pink blemish peeking out from under my shirt, but instead I told her, “It’s my pacemaker.” As I began to explain, Ella interrupted me, pulled aside her shirt and showed me her nearly identical scar. “I have a pacemaker, too!” she said.
I received my pacemaker at Lurie Children’s when I was 14 to regulate my abnormal heart rhythm or arrhythmia. Each year, nearly 30 children and adolescents undergo pacemaker or ICD implantation at the hospital. Just as I was beginning to navigate the halls of high school, I was also forced to deal with the piece of metal that had been surgically implanted in my left shoulder.
For several weeks before my surgery, my younger sister was so upset that she would cry herself to sleep. I found myself having to be strong for her. It was only when I was alone on the operating table that I accepted my fear.
After my surgery, I expected to use my pacemaker as an excuse for my parents to shelter me. But I surprised myself. Instead, I became more mature, and started to advocate for other kids with pacemakers.
Ella wasn’t the first person I shared my story with, but she was the first one I really felt I could help. She had never met anyone but doctors who even remotely understood her condition. The same device that had initially made me feel weak and fragile also allowed me to form a connection with her.
As a relatively shy child, I had never been so open about myself or had someone depend on me the way she did. Before Ella, I was arrhythmia. I felt abnormal and was hesitant to speak up. Since meeting Ella, I have become more than just my heart condition. I am a role model who has learned to embrace her imperfections and help guide others to acceptance.
Building on my experiences with Ella, I became involved in Chicagoland Cardiac Connections (CCC) at Lurie Children’s. Led by cardiologist Dr. Gregory Webster, CCC is a non-profit organization that hosts an annual “Heart to Heart Day” event to bring together kids with pacemakers and ICDs.
That first year, I was the youngest member of the steering committee, and was surrounded by people who had gone through the experience, but as parents, not as patients. My shyness was evident at the early meetings. I never spoke, and turned as red as my hair anytime attention was turned my way. Despite this, my fellow committee members pushed me to take on a prominent role.
My pacemaker forced me to become a mentor, a role I have learned to love. As a part of CCC, I have become independent, and have helped others with pacemakers become more confident. But as much as I have helped them, they have helped me even more in feeling comfortable as a leader.