Author Spotlight
Sophie Henschel
Now East parent Feda Briggs is sitting at her desk when she gets the call from her twin daughters’ school, Piper Elementary.
“Feda, please get to the school as soon as you can, Ella passed out running to the library.”
Her heart sank and her mind floated to seven years before. She sees her sister, Mary-Rose collapsed at her feet after running to tell her goodbye in their hometown, Beirut Lebanon. She died from cardiac arrest.
Please, please don’t let this happen to Ella.
Feda picks Ella up and takes her to the hospital, insisting the doctors do more and more tests to land on an answer that’s not just “coincidence,” memories of her sister lingering in her mind. They find Ella has hypertrophic cardiomyopathy, a disease in which the heart muscle becomes abnormally thick and pumps blood at a slower rate — she’d have to get an Internal Cardiac Defibrillator inserted in her chest to regulate heart arrhythmias.
Feda’s worries shifted. It suddenly wasn’t about whether or not this was a heart issue. It was about how they could help Ella combat the possibilities and unknowns that would come with the disease.
“I [had] really bad anxiety of, ‘If I run, I’ll pass out,’” Ella said. “Recess would come, I’d be running and then I’d go grab my teacher’s arm because I’d get scared. It affected everything. From that day on, nothing was the same.”
Years after her diagnosis, her sister, senior Maria Morrisey, and her mother were also diagnosed with HCM, but their cases are not nearly as severe. From this, they concluded Ella’s aunt likely passed from the disease as well, which worried Feda: her daughter could have a similar fate. But they’ve learned how to cope together, not overthinking possible outcomes and rather living with the obstacles as they arrive.
As Ella progressed through her elementary years, she experienced numerous shocks. She would overexert herself, pass out, go into arrhythmia and be shocked back to a normal beat with her ICD. Ambulance calls were an unfortunate staple, whether at school or with friends on their way home.
“The first time, we were at my old school and we were walking home and she had a shock — I was like 12, and I was on the phone with the police,” Maria said. “As a twin you have a job to make sure she’s OK, and with this now happening I had a very rushed childhood and had to be mature very young.”
Living anxiously with the ICD in her chest was just the first of many changes. Next came goodbyes to all of Ella’s favorite childhood activities — all at once. She was an avid gymnast. Handsprings had once been apart of her daily routine, and she had to say goodbye. Even when she stopped being able to participate, she still sat on the benches with the team, as close to normal as she possibly could be. She took her restrictions and lived with them the best ways she could.
She thought her childhood was ending. She thought nothing could get worse.
Although Ella struggled with not having substantial abilities throughout childhood, everything worsened with high school. She had more shocks, her dietary restrictions tightened and her physical abilities plummeted.
When she was little, she lost sports and running. Now, she can’t eat more than 700 mg of sodium or walk up the stairs at school without losing all feeling in her feet and turning pale out of fear she’ll have another shock.
Her short-term memory is deteriorating, she can’t get too excited about milestones or she’ll overexert her heart. She can’t comfortably stand in the student section at football games, she can’t run to the pep rally on Lancer Day.
She can’t live the life she wants.
“I feel robbed,” Ella said.
****
It was Sept. 11 when Ella’s most recent shock took place. According to Feda, it was the most ironic, terrifying, groundbreaking shock she’d had yet. And all for a squirrel.
As Ella was driving down a side street, a baby squirrel was crossing with another car racing toward it. She skidded to the curb — she cares about animals, a branch of her perpetual kindness.
Ella jumped out and was glad to see the car had dodged it. She picked up the squirrel and took a few steps back to her car — and then everything went black.
She opened her eyes to see her foot on the gas with the engine revving and the baby squirrel darting around the backseat.
What happened? How did she get here?
After she came to, Ella’s heart entered the worst arrhythmia she’s ever had, taking four shocks to bring it back to a steady rhythm. It should only take one. Her heart was getting worse.
“She almost lost her life to save a squirrel, and that squirrel didn’t even live, it died in the car,” Feda said. “I was talking to her doctor on the phone, and all she was caring about was to make sure to tell [her friend] to keep the squirrel safe, not to lose it or let it die. She has no color in her, she’s shivering because she was shocked four times and that’s what she was telling me to do — ‘Get off the phone with the doctor, tell [my friend] to take care of the squirrel. Promise me you’ll take care of the squirrel.’”
According to Feda, that’s just who Ella is. That’s who she’s always been. But nonetheless, the disease was getting worse, and she needed to be checked.
Feda first went to Ella’s doctors at the University of Kansas Medical Center, then to her cardiac team in Memphis, Tenn. for a second opinion. They insisted Ella come in person for a visit. They did echos and ran tests, but they capped out on medicines — there was nothing left to do. Ella and her mom went home.
About a week later, Feda got a call — a call that changed the lives of their entire family.
Ella jolted into Maria’s room. It was a daily occurrence for the two, but this day wasn’t their typical evening gossip. As she tore open the door, legs like jello, she gave her sister a teary-eyed gaze. Confused at the ball of emotions before her, Maria jumped to ask what had happened.
It was official. Ella was going to be on the heart transplant list. After the passing out, the ICD, the restrictions and the grief, her HCM would be over. She was getting a new heart.
“I started screaming and crying of joy because I was so excited for her,” Maria said. “She didn’t know how to feel at the moment — she was just crying, then smiling, then crying again.”
*****
Ella’s second chance at a normal life arrived in a phone call from the hospital.
Maria will stay in Kansas City with their step-dad while Ella, Feda and their biological dad will move to Memphis on Nov. 7. She’ll officially join the transplant list the day they arrive and wait for her new heart, followed by the actual transplant surgery and around six months of recovery time. Her wait time will depend on the priority status she’s given — they’re hoping for 1A, which typically would get her a heart within 30 days. Ella and her mom will be staying in a house they’ve rented out for the first month of their stay. As far as school, she’ll be participating in an SMSD off-campus service program with a reduced schedule to the best of her abilities.
Although it’s a life-changing and lifesaving second chance, she’ll be leaving behind her twin, her friends, her senior year and her life as she knows it.
“Recently, I’ve been sitting in class and I’ll just look around and be like, ‘I’m gonna miss this so much when I’m just in the hospital alone,’” Ella said. “I know some of my friends will visit me, but it’s just like the random people like [teacher Brett] Kramer who I know won’t visit me, but just make life a little better. That’s what’s destroying me the most… it’s like hitting a pause on your life and especially because it’s senior year.”
As hard as the move will be for Ella and her family, the potential for a normal life fuels an intense optimism.
“When she gets excited, she can actually be excited. It’s that type of thing, she gets to do everything like a normal person for once,” Maria said. “I haven’t comprehended it yet because she’s such a big part of my life. I just go into her room randomly because she’s my sister, or I text her stupid stuff, or we fight, it’s that stuff that’s not going to be there for a long time. Her room is going to be empty for months. It’s just gonna be sad not to have her with me.”
Senior Isabella Marquez has been a friend of Ella’s since eighth grade and has seen her struggles with HCM firsthand. She knows that while it’ll be hard for their friend group to function without her, they’re overjoyed at the thought of her struggles dissipating.
“It’s sad because she’s just so young and getting a surgery that severe is really scary,” Marquez said. “But it’s going to benefit her in the future, I’m really happy for her that that’s going to happen.”
Ella’s doctors have informed her that post-recovery, she’ll be able to run for the first time since elementary school and regain her short-term memory. Her hair and nails will no longer thin. She might have the life she always wanted.
Ella and her family will continue to fight the mental battle of guilt that comes with accepting a transplant. But they know whatever conflicting feelings they have of knowing someone will die, the donor will have done so willingly to save Ella’s life.
“I know the person will probably be around my age,” Ella said. “It’s just weird, but I know it’s an accident. I won’t be forgetful like I am right now, my hair will be healthier, my nails, everything. I know I’ll come back and I’ll be able to run. I just think of stuff like that.”
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