Afternoon sunlight poured through the windows of their eighth-floor room, illuminating a “SHINE BRIGHT” banner in multi-colored block letters.
Underneath the window, a fleece blanket covered a green upholstered couch as a makeshift slipcover, and a rainbow bedspread draped over Elsa-studded “Frozen” sheets.
“Welcome to our home,” said Kenda Caffey, mother of 2-year-old Zena Caffey-Arteese.
Sitting in a high chair in her hospital room at Children’s Medical Center Dallas, Zena was halfway through a chocolate chip cookie, gripping the sweet with two glittery-polished hands. She ran her tongue across her lip, trying to reach the melted chocolate smeared above her mouth.
For six months, this Children’s Health℠ hospital room adorned with cutouts of butterflies, hearts and unicorns has been a temporary home for Zena and Kenda. The room that overlooked the downtown Dallas skyline is where mom and daughter fell asleep at night. It’s where Kenda potty-trained Zena and where Children’s Health therapy dogs visited and climbed in her bed. It’s where Zena brushed watercolor paint on paper and squished Play-Doh between her hands.
And this room, with its fluorescent lighting, is where Kenda and Zena waited on a heart.
A blue-eyed toddler who loves to talk, dance and sing, Zena is the youngest of Kenda’s six living children and her heart is failing.
“Back home, back home, back home,” Zena said, wiggling in her chair at the hospital.
“That’s right,” Kenda said. “When do you get to go back home?”
“New heart,” Zena replied.
Born with hypoplastic left heart syndrome – a birth defect that affects normal blood flow through the heart -- Zena has been in and out of the hospital for about half her life.
She also was born blind in her right eye and deaf in her right ear. Kenda said doctors could not find a connection between her hearing and sight loss and her heart condition.
Clinicians at Children’s Health put Zena through a desensitization treatment in hope of wiping out some of the antibodies and opening her up to more donors.
Initially, it worked.
But a couple weeks later, the antibodies returned.
In late May, Zena was discharged from the hospital, and the family filed for an exception to continue waiting for a new heart at home and remain at the top of the priority list. But if the request is denied, Kenda and Zena will move back to the hospital.
The call for a new heart is a waiting game. And Kenda isn’t great at waiting when her daughter’s life on the line.
But the waiting, at least, is different at home. More unpredictable. More chaotic with five kids under one roof.
Kids like Zena count on us. We count on you.
Give to support innovative research, lifesaving treatments and compassionate care.