Prepare to be inspired by the incredible resilience of Joy, a strong-spirited and precious baby whose smile brightens any room. Diagnosed with tetralogy of Fallot, a rare condition caused by the combination of four heart defects in the uterus, Joy started life with a few challenges. She was transferred to the Center for Cardiovascular Intensive Care Unit at Phoenix Children’s after her birth where she underwent two open-heart surgeries. She also had two stents placed in her heart.
The challenges didn't stop there. Joy encountered yet another obstacle in the form of intestinal perforation, a setback that prompted more time in the hospital and G-tube placement to aid her recovery.
Joy has spent most of her life in the hospital, causing her family from Yuma to undergo a painful separation. Her father, Jose, shouldered the responsibility of work and caring for her older brother, Renzo. Meanwhile, her mother, Hortencia, grappled with the challenge of leaving her son in Yuma while she stayed by Joy's side. The family faced tough times, especially when Joy required intubation during her treatment. However, amidst these trials, saving grace emerged in the form of music and art therapy.
As Joy's journey unfolded, Hortencia discovered a powerful source of healing in the form of music and an extraordinary music therapist named Cindy. Amidst the whirlwind of medical care, the compassionate members of Joy's care team recognized the importance of nurturing Hortencia's well-being.
Encouraged to return home to Yuma, to be with her husband and son, and to replenish her own strength, Hortencia was reassured that Joy would be in capable hands. However, before parting ways, Cindy gifted Hortencia a heart recorder—a device provided to patient families as a conduit of love and connection. With this recorder, Hortencia could sing lullabies and record herself reading stories, ensuring that Joy could still hear her mother's voice in her absence. And in that tender exchange, the magic of music unfolded, weaving a thread of comfort and solace that transcended the physical distance.
Hortencia updated the recorder frequently with new songs and stories, and that resource made such an impact. Hortencia says, “The nurses used it as a tool because her numbers on the monitor would change. They said it seemed as though she ‘hummed along with the recording.’”
Because of her family's experience, Hortencia believes all Phoenix Children’s patient families should have a heart recorder. “Music therapy supported me through my difficult moments,” she says. “Finding music as refuge, writing music and activities helped free my mind. Besides music therapy, I’ve had the opportunity to do art therapy, too, and discovered it gave my mind a break while I waited on my daughter’s recovery.”
Child Life was also a great resource, especially for Joy’s big brother. Not only did our specialists help him discover special books, but they also provided activities for him to participate in while he visited sister at the hospital. They even helped sister celebrate his birthday in Yuma with family through video conferencing.
Because of early intervention and diagnosis, and through faith and world-class care, Joy and her family are back together again. She’s thriving and happy, and music speaks to her soul. You can often find her bouncing to the beat of a song playing.
- “Music therapy supported me through my difficult moments. Finding music as refuge, writing music and activities helped free my mind.”HortenciaJoy's mom
Phoenix Children’s Patient Ambassadors are a valiant bunch—they’ve shown immense strength amidst great setbacks. Even though their lives are full of medical appointments, their families want to give back to help other patients.
Each Ambassador has a fundraising page to support Phoenix Children’s. Consider donating to Joy’s fund in support of Music Therapy today.