Could you talk a little bit about your family’s SADS journey?
My story begins on June 11, 2001, when my mom had a Sudden Cardiac Arrest. And unfortunately, she passed away. When you’re six years old, and you lose a parent unexpectedly, there are so many unanswered questions– like, Why did she die? How did she die? It was scary to go to doctor’s appointments, and run on treadmills, and be hooked up to heart monitors. It’s very confusing when you’re that age, and all those tests just keep giving you no answers.
My sister and I were put on beta blockers, just as a precaution, and our doctors made sure that we weren’t doing anything that could put us in a jeopardizing position – which was tough, because we still didn’t know why we needed these medications when we had no answers and experienced no symptoms. I got a little older, and as a teenager, it’s hard to want to take medication for reasons you still don’t understand.
Fast forward to 2013 – I was 17 at the time. And from 2001 to 2013, we still had no clue what caused my mom’s death. My grandmother discovered the SADS Foundation and became connected in the community. Through SADS, she got in contact with Dr. Michael Ackerman from the Mayo Clinic, who took on my family’s genetic case and kept a very watchful eye. He became our protector, someone we could go to and ask questions. We felt safe knowing that we had someone we could reach out to.
In 2013, we had a reason to go visit him in person – because that’s when I had my cardiac arrest.
I was a senior in high school, and physically active. I was working out at the gym. On this particular Wednesday morning, I felt lethargic going into my weightlifting class, which was very unusual for me. I got to about my fourth or fifth repetition, and it was almost like someone had a little carafe with nine ounces of static that was shot into the vessels of my heart.
I collapsed and immediately went into cardiac arrest. I feel very grateful that the two instructors in that class reacted right away. They performed chest compressions for about 15 minutes until the paramedics arrived. After the paramedics got there, they rushed me to the hospital to intensive care. I was put on a ventilator, and it was not looking optimistic at all. This was the first time since 2001 that my family had a reason to panic again. They wanted to transfer me to a different hospital to start CT scans and see what sort of brain damage I had. When you experience out-of-hospital cardiac arrest, about 90% of people have some sort of serious brain damage. It was a miracle that the results we got back showed absolutely no signs of brain damage.
I remember waking up in the hospital, very unaware of where I was and why I was there. And I remember my dad sitting at the foot of the bed. He quietly told me what had happened, and the first thing I thought of was my mom and her younger brother (who had also passed away of cardiac arrest). This experience was a strange connection I had with them.
We were able to gather my mom’s DNA information from the coroner’s office. They tested my DNA, my sister’s DNA, and my grandmother’s DNA. We’d been through so many years of being told “no” for genetic heart conditions. It felt like we were at a dead end. Then, Dr. Ackerman tested for CPVT – and that was our smoking gun. My cardiac arrest ultimately became the answer for my family’s genetic journey.
Since then, I’ve had an ICD. It feels like my own little best friend – a security blanket watching over me.
What was the biggest obstacle to receiving proper treatment?
It can be really tough to feel like you’re at a significant roadblock. And to feel like you’re going to have to live with a question mark for the rest of your life. But it’s so important to channel your remaining hope, and use that hope to keep asking questions. Even when you feel like you’ve exhausted all the questions in your book, never stop asking questions.
What advice would you give to other families in a similar situation?
Don’t feel like you’re at the end of your story – you’re just at a certain chapter. There’s so much life left to live. Ask questions, use resources, go to SADS conferences and watch their videos, and stay connected with others who are in similar waters. Learn to lean on each other. Nobody is alone in this, even when you feel like you are. And don’t feel ashamed for asking questions – that’s been the biggest game-changer for my family.
How has the SADS Foundation helped your family on their journey?
It’s because of SADS and Dr. Ackerman that my family got answers. The cherry on top was being at a SADS conference in Ohio, where Dr. Ackerman was speaking, and he actually told my grandmother and I our genetic results, and it just felt surreal. I feel so grateful for everything that the SADS Foundation has done to get our questions answered. And to help my family be set up for success.