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.

Read Kennedy’s previous post for the first installment of her story.

January 23^rd. Some recognize this date as the day Richard Nixon announced an accord to end the Vietnam War, or the day LeBron James became the 7^th and youngest player to reach the 30,000 NBA point milestone. With those moments forever etched in history, this day holds a value that I’m forever indebted to. For me, January 23^rd, 2013 is the day that I flew to Heaven with gossamer wings.

Only seventeen, following the trendiness of society in a puzzling quest of fitting in (as most dramatic teenagers do). Getting over the convenience of crying and why it caters to the young and wondering, while anxiously solving the case of my life’s unknown purpose. I walked into school that Wednesday morning completely unprepared for the way destiny would manifest itself around me with the sweetness of its burnt out black feathers.

Bigger, Faster, Stronger was a class that helped improve all aspects of my athletic performance as a high school softball player. From strength, speed, agility, and flexibility training, breaking records in the weight-room became my weekly goal. I strived to be more explosive not only in my workouts, but on the pitchers’ mound. I approached the pull-up bar completely full of adrenalin as if I was cavorting into the prelude of a dream. Trying to reach my repetition goal, I began the cadence of pulling my chest up to the bar and extending my arms back down. Inhale, exhale. Reaching my third rep, something wasn’t right. I had to quit despite how hard I wanted to push my strength. Grip so firm, my knuckles had lost their human color and the single vein in my forehead appeared like a quiet captivating abandon. Stop, Kennedy, stop. Once my feet planted the floor, it was as if someone had a carafe with nine ounces of static, generously poured into the sinus node of my heart. Collapsing to the ground, I immediately was in cardiac arrest.

Expecting to find minimal injury, my teachers rushed to my side and instead, found me unconscious, unresponsive, and in my most vulnerable moment. Chest compressions and mouth-to-mouth resuscitation was immediately administered as a classmate dialed 911 with frantic fingers. Although stunned at what had happened, my rescuers knew that if I were to survive, paramedics needed to get here and get here quickly. For fifteen minutes my pulse had vanished. I knew it was going to leave me someday but would’ve never imagined it would possess the qualities of evanescence as a young teenager. What felt like an eternity was only minutes, faculty yielded care to firefighters, emt’s and paramedics. After assessing my cardiac rhythm, I was in ventricular fibrillation (rapid, erratic, electrical impulses) requiring me to be shocked a total of three times. Because of the skill and rapid response, my pulse was recovered. Yet unable to breathe on my own, I was rushed to the hospital and put on life support.

About 90 percent of people who experience severe out-of-hospital cardiac arrests die, so the chances of recovery were now lifted in roars of constant prayer. My dad and grandmother did not deserve to be in that hospital waiting room again. My grandma now having lost both of her children, my dad losing his wife, and now here they are in fear of losing their daughter and granddaughter to this masked shadow. Why was death trying to pluck our loved ones like petals from a flower-it loves them, it loves them not.

Carrying the news for anxious ears, the doctor informed my family that I was showing signs of slow recovery. “We are amazed but cautiously optimistic.” It was a miracle I had survived, but because I flat-lined for fifteen minutes, one of the biggest concerns was the impact of prolonged oxygen deprivation on my brain. With cardiac arrest, the lack of circulation affects not just one part of the brain but everywhere in the brain where blood flows. When cardiac arrest occurs, it is essential to start cardiopulmonary resuscitation (CPR) within two minutes. By nine minutes, severe and irreversible brain damage is likely and chances of survival are low. If my teachers hadn’t of administered CPR as quickly and consistently as they did, I wouldn’t be alive. CPR literally saved my life that Wednesday morning, but what trauma would be waiting for me?

I was transferred to University Medical Center where different brain tests were performed and miracles began to happen. Results revealed no signs of permeant brain damage which left the medical team astounded. To be deprived of oxygen that long without the extra assistance of an Automated External Defibrillator and be completely free of cascading symptoms is proof that I was under the care of no human hand. My eyes opened and I found myself laying in a hospital bed connected to tubes and wires like a marionette puppet. I had no recollection of what happened but as I was listening to the story, it sure felt like an episode of Grey’s Anatomy. The question I remember asking myself was “but… why did this even happen?”

Imagine forcing yourself to be content with the reality of never knowing why your mom died. Or my grandmother looking at “anomaly” on her seventeen year old son’s autopsy report knowing deep in the fibers of her soul that there had to be more to that declaration. From being prescribed heart rate stabilizer pills to being hooked up to the glittering menagerie of frequent electrocardiogram tests, it seemed like a nuisance for two little girls who felt like the unfairness of life had just slapped them in the face. I can’t speak for my sister but I know that my tears found refuge in the palms of my hands.

With my grandmother’s persistent research with the SADS Foundation, we knew it had to be within the genetic composition of our family tree. Connecting with the Mayo Clinic, our family’s heritable cardiovascular disease specialist realized that the electrical heart conditions I had been tested for twelve years prior, were mimickers of one uncommon needle in a haystack. I was with my grandmother at a SADS conference in Ohio when our specialist Dr. Ackerman told us the results of his research. He looked at my grandmother, looked at me, and says “Pam, Kennedy, we found it.” From implantable cardioverter-defibrillator (ICD) surgery to scrutinizing DNA samples, catecholaminergic polymorphic ventricular tachycardia (CPVT) was our smoking gun. The day my heart freed Excalibur.

This rare genetic condition often shows up in childhood with first sightings of fainting, heavy exercise or strong emotion. The two upper chambers of the heart are called atria and the two lower chambers are called ventricles. Normally, the signal to start your heartbeat comes from a group of specialized cells in the heart called the sinoatrial node. People with CPVT can develop a sudden, irregular and rapid heart rhythm from the ventricles called ventricular tachycardia (VT). With this condition, the heart beats so quickly that it does not have enough time to fill between beats. As a result, not enough blood gets pumped forward to the body.

It took me some time to truly comprehend this big anatomical orchestra, but it’s through the music that I’ve learned what it truly means to be a cardiac arrest survivor and I wouldn’t change it for the world. There was a season where I felt like I was trapped in winter. Through that winter I learned the nature of patience and with that patience, the harvest will be rich in the end and darkness will dissipate.  With the promise whispered in my ear that my destiny on earth wasn’t finished yet, my heartstrings became the feathers on His golden quill.

Amazing things happen when we are liberated from our own fear. As we let our light shine from that freedom, we unconsciously invest in giving people permission to do the same. Never give up. You never know what beauty can be found in our darkest moments.

No matter what your age, death is not easily defined. It has many befuddling attributes, but there was one in particular that trapped my mind in a triangular nightmare of utter confusion: Death’s irreversible ability. Once your body is dead, it cannot be alive again on this earth. Every plant, every animal, every person. This was a wild idea; I’d talk about dead people as if they went on a trip, took a nap, and trusted the possibility that dead things can come back to life with the help of water, food, medicine, or even a little pinch of pixie dust. It was as if certain groups of people were protected from their inevitable expiration dates. Teachers, parents, Mickey Mouse, and myself were “untouchable” until old age had its way. It’s funny how as children, we so often lace our fingers with the hand of our own innocence.

For twelve years, the answer to her death became my family’s Excalibur. Month after month, test after test, negative result after negative result and still no answer. I was afraid of finding comfort with this insulting mystery. Maybe I was dreaming? Would I wake up the next morning, rub my eyes raw and find time had stood still? Maybe I’d find her at the kitchen table with my dad sitting side by side, writing notes in the margins of her Bible. My sister and I would be getting ready for school and then we’d all gather for breakfast before we ventured off in our daily schedules. As much as I wanted to speak that dream into existence, I knew I had to return to my new reality: feeling alone in a familiar place, standing on expanding pavement with my hands in shallow pockets.

You’ve come this far in my story, and you may be wondering if we found our mysterious answer. If I told you in one post, we’d be seventeen paragraphs deep and your eyelids would be taped to your forehead like a Tom & Jerry cartoon. I can assure you that the sword in the stone does get extracted! It just had to take my own heart to free Excalibur…

(Cliffhangers… Am I right?!)