By Rebecca Scott, as told to Stephanie Watson
I was 45 years old and healthy. I'd never experienced any heart issues. There were no physical warning signs leading up to the cardiac arrest that almost took my life.
Heart issues do run in my family. My uncle has dilated cardiomyopathy -- a disease of the heart muscle that causes the left ventricle (the main pumping chamber of the heart) to enlarge. As the ventricle's muscle stretches and thins, it can cause the heart to pump less blood (heart failure) and can result in abnormal heart rhythms (cardiac arrhythmias). My uncle has had those symptoms for about 20 years. About a year and a half ago, his heart had declined to the point where he needed a heart transplant. Right in the middle of that process, his 18-year-old son started to experience extreme cardiac arrhythmias too. He had to have a defibrillator implanted to protect him when he experiences those dangerous heart rhythms.
Because both my uncle and cousin had these issues, their doctor did genetic testing and found that they shared a mutation in the FLNC gene that codes for a protein in heart muscle. Having an FLNC gene mutation increases a person’s risk of having cardiomyopathy, arrhythmias, and other serious heart problems. My uncle suggested that my mother also get tested. She was positive for the genetic mutation too.
The next step was for my sister and me to get tested, because we each had a 50% chance of carrying the gene mutation. I figured there was no rush, since I was healthy and never had any heart problems. My mother encouraged me to move quickly, though, because I had two children to think about.
In August of 2019, I met with a genetic cardiologist. When my test results came back, I was positive for the mutation, but my heart structure looked fine on the echocardiogram (heart ultrasound). I showed no signs of dilation in my ventricle. The final step was to look closer at my heart’s rhythm. I wore a 24-hour Holter monitor to track my heart's rhythm. I turned it back in to my doctor on a Friday and heard nothing back the next week. I figured my heart was fine.
Cardiac Arrest on the Court
On Sunday, Oct. 13, 10 days after turning in my Holter monitor, I went to play tennis with my daughter. We're both competitive tennis players.
I don't remember what happened next. My knowledge of that day's events comes from secondhand stories told by my daughter and others who were there. From what I heard, I wasn't complaining of any symptoms.
My daughter and I were warming up our serves. Her first serve went into the net. She looked down to prepare her second serve. When she looked back up, I was lying on the ground.
I was very lucky. Thank goodness there were three tennis pros close by and they were all trained in CPR. They sprang into action. Two of them performed CPR compressions. One grabbed a golf pro, who performed rescue breathing on me.
Someone called over a doctor who was at the club. I've been told he was the one who administered the automated external defibrillator (AED). There was one right near the tennis court.
My heart stopped for 15 minutes. Emergency medical services (EMS) didn't arrive for 7 to 8 minutes. The tennis pros started doing CPR as soon as I collapsed. I received six shocks from the AED. These amazing bystander efforts kept me alive until the ambulance arrived.
Ultimately, EMS did manage to restart my heart, and I was admitted to the hospital. I was put into a hypothermic coma, where doctors cooled my body to reduce damage to my brain until my heart had recovered enough to pump blood effectively again.
My doctors thought there was only a slight chance I'd survive. The next 4 days were really touch and go, but ultimately I did wake up.
Before leaving the hospital, I had to have a defibrillator implanted. It will protect me if my heart ever goes out of rhythm. When a dangerous arrhythmia happens, my defibrillator automatically shocks my heart to bring it back into a normal rhythm. This means that I can be safe even if I am alone. My mother and sister (who had also tested positive for the genetic mutation) had the surgery, too. Now all three of us have implanted defibrillators. My daughters were tested too, but fortunately they were negative for the mutation.
I was very lucky, considering that my heart stopped beating for 15 minutes. I ended up with five or six broken ribs from getting CPR on the hard tennis court surface, but I was able to recover at home with nothing more than a few nurse visits.
CPR Training Saves Lives
One of the things my experience made me realize is that people need to be trained in CPR. I was incredibly lucky to have been in a place where people were trained. The bystanders made all the difference. I wouldn't be here if I hadn't had immediate CPR.
In February 2020, my family and I got together and said, "What are we going to do with this experience?" We decided we wanted to start doing CPR training sessions for friends and family. We set up a training session for 50 people, but then COVID-19 hit and derailed our plans.
With the pandemic making in-person training sessions impossible, I started to dig into CPR laws. I discovered that there was legislation pending in Massachusetts about how 911 operators triage phone calls from bystanders, but it hadn't been passed. I realized that my state was very behind in CPR laws compared to other states.
Since then, I've been coordinating with the American Heart Association to figure out how to support legislative efforts, including mandating CPR education as a requirement for high school graduation. I've also been working with my daughters' school to scale up training for students.
I know that I was lucky. Really, really lucky. The chance of surviving a cardiac arrest is tiny. The part that's really scary to me is that only a small fraction of the time does a bystander step in and initiate CPR before EMS arrives. During the wait time -- 5-7 minutes -- your chance of survival goes down. The only reason I don't have neurologic damage is that I got both CPR compressions and shocks from an AED right away.
Before my cardiac arrest, I was ignorant about how staggeringly bad the statistics are. I know I'm not alone. CPR is an easy tool. And when you think about the fact that your two hands, with just a small amount of training, can save someone's life, doesn’t it seem like every single person should be taught that basic skill?
Rebecca Scott is a health care attorney and mother of two who lives in Wellesley, MA.