The white plastic bag came from a hospital in Wilkes Barre and contained the clothing that Julie’s 19-year-old daughter, Peyton, was wearing when she died of sudden cardiac arrest related to her genetic heart condition called hypertrophic cardiomyopathy.
Every hair on her body stood up. Inside the bag was a red long-sleeve T-shirt with the quote, “What we do for ourselves dies with us. What we do for others and the world remains and is immortal.” Julie had never seen her daughter wear that t-shirt, but that particular quote spoke volumes.
Living with a chronic condition
From the time Peyton was in fifth grade, the family knew she shared the same heart condition as her mother, but it made Julie wonder about other families who had no idea their child could be at risk.
Sudden cardiac arrest is the number one killer of student athletes, Julie said.
“We were educated, informed, proactive, and it still happened to us. We never ever in a million years thought this was going to be our story,” Julie said.
According to UPMC’s heart and vascular institute website, the heart suddenly stops beating and pumping blood during sudden cardiac arrest.
Sudden cardiac arrest is not a heart attack. Julie likened a heart attack to a plumbing issue where there are signs there may be an issue. Symptoms of a heart attack include chest pain, pressure, and sweating, Julie said.
In comparison, sudden cardiac arrest is like an electrical issue where suddenly all the lights go out, Julie said. But some warning symptoms can include dizziness, fainting, shortness of breath and chest pain.
A family history
When Julie was in her late 20s, she was diagnosed with hypertrophic cardiomyopathy, or HCM.
According to UPMC, HCM is the thickening of the heart muscle and could eventually obstruct the outflow of blood.
Julie used to get lightheaded when she played sports in high school. When her mom took her to the hospital, the doctors told her it was because she was tall.
The lightheadedness and dizziness continued through her 20s, and there were times when Julie would wake up in the middle of the night, heart racing. Her husband would take her to the emergency room, but by the time they got there, everything was fine.
Until one day Julie went to a doctor, and he ran an electrocardiogram. The doctor’s face was white when he returned. He told Julie she needed to go see a cardiologist immediately.
“They were shocked — shocked. I had a completely abnormal electrocardiogram,” Julie said.
After they ran additional tests, she was diagnosed with HCM.
“Once they finally figured it out, and I finally got the defibrillator, I felt so much more confident and comfortable. I knew I was being taken care of. I knew I wasn’t crazy, which was huge,” Julie said.
Because HCM is genetic, doctors were able to properly diagnose Julie’s father, too, who also had heart issues. But being a mom, Julie was worried what this diagnosis would mean for her children.
Doctors screened Peyton and her siblings. When Peyton was in fifth grade, doctors discovered that the same condition had begun to develop.
An unthinkable outcome
Peyton was angry.
Julie told her daughter, “No, you’re not going to live your life that way. That’s not acceptable. There’s a couple things you can’t do, and there’s a lot of things you can do.”
The Walkers took Peyton to doctors at Boston Children’s Hospital for evaluations. Locally, she had a pediatric cardiologist. She was put on medication. Her activity was restricted, and her parents let her play competitive sports through eighth grade. Coaches and teachers knew about her diagnosis. After middle school, she started rock climbing and working at Roundtop Mountain Resort in Lewisberry.
“Even once Peyton got diagnosed, I just never imagined that it would lead to her death,” Julie said.
Peyton had had symptoms — lightheadedness, heart palpitations, and in the couple of months before she died, Peyton often felt like she was going to pass out.
Peyton was in her sophomore year at King’s College in Wilkes Barre and studying to be a physician’s assistant.
It was a Saturday morning in November 2013. Peyton had been up late studying for her test, and got ready to go to work as a scribe in an emergency room.
Her roommate woke up after hearing music and found Peyton lying by the front door.
The roommate ran to get the resident assistant, who quickly called 911 and began administering CPR. But, Julie said, Peyton was already gone. They don’t know how long Peyton was lying on the floor before her roommate found her.
Back in Central PA, Julie and the family were sitting down for breakfast when her husband’s phone rang. The president of the college was calling to tell them that Peyton was taken by ambulance to the hospital.
Ten minutes later, the hospital called to tell them that Peyton was brought in in full cardiac arrest. Julie yanked Peyton’s brother out of bed and went out the door without a coat or shoes.
On a normal day, the drive from their home on the West Shore to Wilkes Barre took two hours. The dread built the closer they got.
Two priests were standing in the emergency room.
“I was like, ‘Oh no.’ I knew immediately. And I walked in and said, ‘We’re here for Peyton Walker,’” Julie said.
The Walkers were led to a room where they were met by a team of doctors who told them that Peyton died of cardiac arrest.
“You’re in shock because you’re like, ‘I was just having pumpkin pancakes.’ That was my Saturday. In the span of a few hours, now I’m planning my daughter’s funeral,” Julie said.
Six years ago, Julie couldn’t have imagined where she would be today.
Peyton’s sudden, tragic death inspired Julie to start the Peyton Walker Foundation, which offers heart screening clinics and CPR training, donates AEDs (defibrillators), and advocates for legislation to promote electrocardiogram testing for student athletes.
“If a kid doesn’t get an electrocardiogram, they’re probably not going to know they have this potentially ticking time bomb in their chest,” Julie said.
To date, the foundation she started in her daughter’s name has donated 110 AEDs throughout the community, which has been used to save a mother in cardiac arrest who was at her son’s baseball game.
Over 3,000 students have had free heart screenings through the foundation, and of that number Julie estimated that between two to three percent of them had a potentially life threatening heart issue.
One of them was 18-year-old Emily Allen, a figure skater who lives in Hershey.
Emily has been skating since she was about 10 years old, and she started noticing that she got dizzy and passed out when she was about 12.
One day in October 2015, Emily was working on a jump when she started feeling dizzy. She hit her head on the ice and got a concussion.
Emily took over two months off from figure skating to recuperate from her concussion, yet all of her symptoms were amplified when she got back on the ice. Her family stumbled upon a Peyton Walker Foundation heart screening.
Her electrocardiogram was abnormal, and Emily was later diagnosed with neurocardiogenic syncope and POTS (or Postural Orthostatic Tachycardia Syndrome).
“I was worried that they were going to say that the issue wouldn’t let me skate,” Emily said.
Since her diagnosis, Emily has a treatment plan, been following up with a cardiologist and is still skating.
“I almost quit because of this problem I was experiencing. If it wasn’t for the Peyton Walker Foundation my life would be very different,” Emily said.
The mission of The Peyton Walker Foundation is to increase awareness and survival rates for Sudden Cardiac Arrest. Along with donating AEDs and providing CPR and AED training, the foundation provides free heart screenings to Central PA students. To learn more, visit PeytonWalker.org or call 610-585-2677.