On the morning of June 7th, 2014, our just turned 2-year-old daughter suffered a sudden cardiac arrest in our home. This came as a complete shock to us, as it occurred with no warning whatsoever. Once stabilized in the ambulance in our driveway, she was transported to the local hospital. There are many sights and sounds from the emergency room that I’ve buried a bit too deeply to express, but one thing that stands out in my memory is the sound of my own bewildered voice asking – over and over again – “How did my 2 year old have a heart attack? I don’t understand.” Patiently and gently they tried to explain to me that she did not. She had experienced cardiac arrest.

Like so many people, I had no idea there was a difference between a heart attack and sudden cardiac arrest. Like so many, I didn’t understand many things about the importance of heart safety and awareness.  It’s not that I didn’t care about those things, but the significance had never before touched my life.

After our daughter’s cardiac arrest, it took 2 weeks for her to be stable enough to implant an ICD. We spent those weeks with her in the Cardiac ICU at Children’s Hospital. Though there was the stress of the constant ups and downs and monitors beeping and hospital life, there was still the feeling of safety that being in a hospital provides. Of course, we wanted to be home, but in the hospital, we knew emergency care was surrounding her.

After 3 weeks, we were home with our daughter. Though she was stable on medication and recovering well from her ICD surgery, the reality of her diagnosis and all she had been through started to sink in. The paradox of the beeping monitors in the ICU is that they elevated my stress, yet provided a constant assurance that she was being watched with literally every heartbeat. At home, silence was peaceful, but also nerve-wracking. Was she going to be ok? Would her ICD fire? What should we do about this, that, and the other?

Google became my best friend, and my worst nightmare. As I craved to learn all I could possibly learn to understand our daughter’s diagnosis, I poured over article after article, online medical journals, research papers, statistics and everything I could possibly find online.  Instead of encouraging me, quite honestly, it terrified me and I began to become overwhelmed with anxiety over all of the unknown possibilities. I knew no one else with this condition called Long QT other than the nameless participants of case studies I had read online.

While searching for information, I came upon the SADS website. I was particularly intrigued by the “Stories: Living and Thriving” tab on the front page, which features stories of those thriving with the condition. In a quest to turn my anxiety around, I resolved to read only those stories and nothing else. For days I poured over these positive stories offering hope and encouragement… reading some of them over and over again. I began to see our daughter’s diagnosis in a new light. For the first time, I realized that we were not alone in her diagnosis, but that there are thousands of families, just like ours, living and thriving with Long QT. Through the SADS site, I was able to make my first connections with families living with Long QT and those relationships have provided a wonderful community of encouragement and support for our family.

Though all of the medical journals I had read online had provided me with a plethora of scientific information, the SADS website brought everything into clear, concise perspective. Not only did the SADS website help give us hope for our daughters diagnosis, we also learned more about heart safety in general and new research efforts. The organization provides practical advice, support and referrals for all families affected by sudden arrhythmia death conditions. As a result, the SADS organization equips people to become an advocate not only for themself or loved ones, but also for those who are yet to be diagnosed. We do this by spreading awareness in many different ways. Perhaps we ask were the nearest AED is every time we enter a gym, sporting facility or school. We educate by clarifying and raising awareness between the difference from a heart attack and sudden cardiac arrest every time a media outlet posts an inaccurate headline. And we advocate by sharing and posting pertinent information not only on our social media sites, but also in real life dialogue with others. We educate; we advocate; and in doing so we increase the chance that more lives will be saved by the awareness we’ve raised.

Thank you SADS for being an important anchor of support for all of us affected by SADS conditions.

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