Living with a Full Heart: After Sudden Cardiac Arrest, Teen Pays Her Miracle Forward

Reprinted with permission from The News Journal
Written by Kevin Tresolini
 
Jeanie and Grant Firestone, sitting in a waiting area in the Christiana Hospital emergency room, kept hearing the slow approach of footsteps. They dreaded the sound.
 
Is this the doctor coming to deliver the horrible news that Gracie, their daughter and sister, was gone?
 
It was after midnight on Tuesday, June 7, 2011. Three days before, Gracie had graduated from Tower Hill School.
 
In addressing 53 fellow grads that night, Gracie, the class president, said, "Whatever you do, let it be something that matters. Begin to believe sincerely that the world is what we make of it."
 
By that time, she had already left an indelible legacy at Tower Hill. She had been Amazing Gracie.
 
She excelled as a student. She starred as an athlete, starting for five years in three sports -- volleyball, basketball and soccer -- and earning the Delaware Interscholastic Athletic Association's 2011 Scholar-Athlete Award.
 
She had made her mark in community service, starting an organization -- Let the Kids Play -- that collected athletic equipment for underprivileged students nearby in Wilmington and far away in Kenya.
 
"Didn't have to do it," Gracie said. "Wanted to do it."
 
In all its anatomical, blood-pumping fervor, her heart pounded as she dashed across the soccer field, scurried up and down the basketball hardwood and leaped at the volleyball net.
 
With every ounce of its symbolic compassion, her heart was in the proverbial right place as she collected that athletic equipment, convincing student-athletes from Tower Hill and its Independent Conference rivals to do the same.
 
And then, late on the night of June 6, Gracie Firestone's heart just stopped.
 
She had gone inner-tubing on the Brandywine with friends that afternoon, had a spaghetti dinner with her mom and brother at home, then went to the YMCA for a late workout.
 
Gracie returned home, sat on her sofa, ate strawberries and watched TV, then went on her computer. At about 11:30, she walked into her mother's room.
 
"I don't feel very good," Gracie said.
 
"She groaned on her way down," Jeanie said, "this horrible gurgling noise. I touched her skin and she was cold and clammy."
 
Jeanie Firestone dialed 911 and then called Grant's cellphone, not realizing Gracie's brother was also home. Jeanie screamed "Grant, there's an emergency!" He hurried down the stairs from his bedroom into his mother's room. At the direction of the 911 operator, they put Gracie on her back on the floor.
 
Grant, 23, and a recent graduate of Haverford College, had taken a CPR course at Tower Hill about 10 years earlier and began to administer the potential life-saving procedure. At the time, Gracie was only taking a breath, he noticed, every five to 10 seconds.
 
The first person on the scene, four minutes later, was New Castle County police officer Michael Justison, who detected no pulse when he reached Gracie and began administering CPR. Paramedics from the Talleyville Fire Company, located very close to the Firestone home off Shipley Road, took over that task when they arrived.
 
They also drilled into Gracie's shin to provide an entry point for medicine into her bone marrow, where it could work faster and more efficiently than if put in her veins, which were collapsing. While that was being done, Justison asked the Firestones standard questions about drug and alcohol use and previous medical problems.
 
"We said, 'We know you probably hear this from everybody but ... Grace doesn't even drink Red Bull," Grant said.
 
All the while, Justison, a 38-year-old former A.I. du Pont High football player, kept thinking how odd it was to see an athlete like Gracie undergoing such trauma. At the same time, he thought, because of her physical conditioning, maybe this girl had a chance.
 
In addition to the CPR, Gracie was given shock treatment in an effort to restart her heart. After about 20 minutes, she was put in an ambulance for a ride to Christiana Hospital.
 
Grant climbed into his car to follow the ambulance. At first, he saw paramedics working on his sister through the ambulance's back window because the lights were on, but then the lights went off. What did that mean? The ambulance was traveling at the speed limit, with just one flashing yellow light. What did that mean?
 
And then she collapsed face-down onto her mother's bed.
 
So he drove and he stared at that light, wondering why it had to be his sister, and not him, inside.
 
After a busy school year, he had so looked forward to summer and spending more time with his only sibling.
 
Arriving at the hospital, Grant learned that medical personnel had regained and lost Gracie's heartbeat. So after his sister was whisked away, he and his mother waited and wondered, and the footsteps kept coming.
 
One time, they arrived bearing a bag. Inside it were Gracie's belongings.
A return to the field, despite doctor's warning
 
The Implantable Cardioverter-Defibrillator is located near Gracie Firestone's left collarbone. The scar is visible, and so is the outline of the ICD box underneath her skin.
 
It was annoying at first. When Gracie resumed running last summer, she felt it bobbing up and down underneath her flesh.
 
"Now I'm used to it," she said.
 
Gracie is a freshman at the University of Delaware, a pre-med honors student studying biology. She played for its club soccer team last fall.
 
She admitted to being "a little hesitant" at first and worried what the impact would be on her teammates if anything happened to her physically. A doctor in June had suggested contact sports such as soccer should be avoided. When the school year started, her cardiologist said he preferred she wait six months before playing.
 
" 'Preferred' is an interesting word," Gracie said she rationalized to herself.
 
She had brought her cleats to college, just in case.
 
UD's club soccer team tryouts drew 80 candidates. Gracie was one of 22 to make the team. The team is self-coached and run by the players. The group overseeing Gracie's tryout had implored the others to "Bring her back! Bring her back!" after that first day, said team President Kelly Mohns.
Gracie didn't tell the leadership group about her medical situation until after she made the team, and she had to start slowly, playing 10-minute stints before tiring.
By late in the season, however, she had earned an all-important starting central midfield spot and rarely left the field. On a cold, rainy day at Penn State, she felt her comeback was complete.
 
"We were in overtime and it was our second or third game of the day," she said. "It was pouring. It was freezing. No one wanted to be there. I was just like, 'I don't care at all. I got to play the whole game.' I walked off the field and someone said, 'How do you feel?' and I just said, 'The best.' "
 
"She had this big smile," Mohns said.
 
Gracie didn't need a near-death experience to savor such simple pleasures and treasure the feel of a soccer ball coming off her foot. She likely would have relished it anyway.
 
But she values it more now. Gracie had hoped to try out for the UD varsity team this year. But UD follows the 36th Bethesda Conference eligibility recommendations for competitive athletes with cardiovascular abnormalities, which states "the presence of an ICD device should restrict individuals to class IA activities," which are billiards, bowling, cricket, curling, golf and riflery.
 
Gracie said the policy does not prevent her from playing on the club team. And she is hopeful the ICD could even be removed in a few years, but it's too soon to decide.
 
So why did Gracie Firestone's seemingly stout heart give out?
 
"We haven't been able to identify an exact reason why she had cardiac arrest," said Dr. Brian Sarter, her cardiologist.
 
Testing ruled out the primary likely genetic cause, Long QT Syndrome, in which the heart's electrical pattern is compromised and a ventricular fibrillation, such as
Gracie suffered, can occur.
 
It was likely a virus that caused the problem, though what type and how she contracted it remains a mystery. With the ICD installed, she shouldn't have any problems. Her heart has pumped normally since last summer, and the ICD has not been triggered to assist her heart since it was implanted.
 
In addition, Gracie has no neurological damage, which is the case in about six percent of Delaware cardiac arrest survivors, Sarter said.
 
Gracie's cardiovascular strength and age -- she turned 19 last Nov. 20 -- were factors in her favor, Sarter said. Her only residual effect is some short-term memory loss.
 
"If I hadn't been in that shape I was in, I probably wouldn't have been able to fight it," Gracie said. "I'm glad it happened to me rather than someone else who couldn't."
 
When Jeanie Firestone reflects back to last June, she often recalls the most crucial aspect of the entire situation, and the first in a succession of reasons why her daughter is likely alive today.
 
 
"By the grace of God," Jeanie said, "she made it to my bedroom."
 
Hospital stay marked by an outpouring of love
 
Gracie doesn't remember anything about June 6 and 7, when her heart stopped three times. This, she confessed, is probably a good thing.
 
When she later read the details of her early days in the hospital, chronicled by Grant and Jeanie on carepages.com, she said "it was like reading somebody else's story."
While her brother and mother waited, hearing footsteps and fearing the worst, she had spent two hours in the ER. Doctors restored her heartbeat and then transported her to the Intensive Care Unit. Gracie was heavily sedated and on a ventilator.
 
"They just wouldn't give up on her," Jeanie said.
 
When her mother and brother first saw Gracie, she appeared cold and lifeless, a film covering her eyes. Her skin was gray. She was in a medically induced coma.
 
Improvement came slowly. By that Wednesday, she opened her eyes and moved them to follow visitors, apparently noticing activity around her.
 
On Thursday morning, she squeezed hands on command and shook her head "no" when a physician asked if she felt pain. That afternoon, the ventilator was removed and Gracie, now off sedatives, too, whispered her name to a nurse. She was alert and responsive when friends visited.
 
On Friday, she got out of bed and walked with limited assistance from a physical therapist. Friends and family marveled at how quickly she was improving.
 
Sometimes she awoke in tears, not sure what was happening to her.
 
But that night, while eating dinner, Gracie leaned toward visitor Amanda Blackstone, one of her coaches at Tower Hill, and slyly said, "Let's get out of here."
 
By that time, her room was full of cards and letters from admirers. At Tower Hill, where seniors had graduated but school was still in session, fright was beginning to ease.
 
After Gracie fell ill, word spread fast through the school, attended by about 750 students in prekindergarten through high school. Gracie had been there since first grade. Students wrote cards and created other pieces of artwork that filled a wall.
 
"Every teacher, every kid, was walking around in a trance," Jack Holloway, Tower Hill's athletic director, said of the immediate aftermath. "Everybody loves Gracie."
 
Close friend Maddy Buckley, an Archmere graduate and Hockessin Academy Select soccer teammate, had gone to see Gracie on Tuesday night with their club soccer coach, Deb McCauley.
 
"It was the scariest moment," Buckley said, because of the shock of what had happened and concern over Gracie's condition. "She had a tube in her mouth and she was taped up all over her face. She was in that medically induced coma to give her brain some rest, and I just wanted her to wake up. I've never been in that kind of situation."
 
Gracie, Buckley noticed, still had her French manicure -- white tips -- intact from the busy weekend.
 
"I felt a little bit better knowing she was in good hands," Buckley said, "but I felt uneasy because they didn't know how her brain was going to be when she woke up.
 
I just wanted to shake her and wake her up. But I was glad to be there."
 
Daily visits comforted Buckley, because she could tell Gracie was progressing.
That Thursday, at the Blue-White Senior All-Star Soccer Game, in which Gracie had been selected to play, players wore wristbands with Gracie's name and the number 4 and had a moment of silence. Buckley went to a microphone, said a prayer and updated everyone on her friend's progress. After the game, which was at Caravel Academy, she brought Gracie her jersey.
 
"She's an all-star," Buckley said of Gracie, whom she remembered dashing from basketball to club soccer practice during her Tower Hill days. "She is such a good athlete."
 
Saturday at the hospital, Gracie was moved to the Cardiac Step-Down unit. On Monday, one week after her heart gave out, a catheterization revealed it had no structural damage. On Wednesday, Gracie had the ICD surgically implanted in her chest.
 
And on Thursday, June 16, Gracie went home.
 
Even more motivated to help the less fortunate
 
So how does the young woman who seems to put everything into life give even more when she gets hers back?
 
That's the question Gracie Firestone has asked herself.
 
The word Tower Hill soccer coach Garry Chandler likes to use to describe Gracie is "unique."
 
Inside his cell phone, he has saved a text message he received from her late on the night of June 4, 2010, after Gracie's goal had given Tower Hill a 1-0 state championship win over previously unbeaten Caesar Rodney.
 
"You did this," the text read. Chandler, while flattered, begged to differ.
 
"Even in her moment," he said, "that's who she is. I've never had a player who is so talented yet so giving and so selfless."
 
Justison, who led the ambulance to Christiana Hospital in his police car, keeps in touch with the Firestones. During a visit to their home last summer, Jeanie Firestone wondered how she could ever thank people like Justison and others who saved her life.
 
"I said, 'My thanks enough is right here, standing talking to you and Gracie,' " Justison said. "There's nothing you need to do. It's my job. It's my honor. That right there is thanks enough, that she's standing on the front porch."
 
Her recovery, which included cognitive and physical therapy, was buoyed by the support of more medical experts and a huge network of dedicated friends.
 
"The community saved us," Grant Firestone said.
 
Saved Gracie.
 
Only Grant calls her "Grace," which is, of course, her given name. It started when they were very young for that typical sibling-rivalry reason: "Because she didn't like it," he said.
 
To everyone else, she has always been "Gracie," but now she feels particularly graced. So she is more determined to find ways to make a difference.
 
Her experience with Let the Kids Play made her want to someday visit countries and see kids using the equipment she had helped collect.
 
"I'm pre-med," she said of her UD major, "and it just makes more sense now anyway. My goal is to not just visit but be able to help medically. It's a dream I have. It's in the back of my mind when I'm studying for a chemistry test."
 
Other motivation comes from the way people, some of whom didn't know her well, if at all, came to her aid. So she pledges to always "live in gratitude."
 
She has already reached out to the less fortunate family of UD club soccer teammate Nicole Marzano, who died in a car accident returning to Newark from their regional tournament victory last fall in Philadelphia.
 
On Monday, the National Federation of State High School Athletic Associations honored Gracie in a ceremony at Tower Hill for being its National High School Spirit of Sport Award winner for an eight-state region, including Delaware.
 
"I don't think I've ever been so impressed or moved by a nomination as I was by Gracie's," said John Gillis, the federation's associate director. "Her story is really exceptional and inspirational as she truly exemplifies what the Spirit in Sport Award is all about. From her outstanding academic and athletic accomplishments, to helping others through Let the Kids Play, to overcoming her own challenges, Gracie serves as a strong role model for all of us."
 
By that time, Gracie had, in an email, promised Gillis "that the Spirit of Sport will forever run through my veins."
 
Her heart is clearly up to the task.
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