BY ERIN O’DONNELL, DIRECTOR OF DEVELOPMENT, EDUCATION, AND GLOBAL HEALTH
Jaye-Jo will never forget the moment she banged a pot and pan together in her baby’s room, her heart pounding as she waited for a reaction. Shayna, her lively, always smiling daughter of 11 months, didn’t even stir. In that instant, denial met reality. Her baby couldn’t hear.
What followed was an odyssey of advocacy, uncertainty, and resolve. Had Shayna been born just a few months later, she would have been diagnosed with hearing loss at birth, thanks to the local implementation of newborn hearing screenings and the work of the House Institute to manage the adoption of the program in Southern California. Instead, Jaye-Jo spent months adrift in a sea of confusion about her daughter’s developmental delays, navigating a medical system that reassured rather than investigated. Looking back, the signs were there. Unlike other babies her age, Shayna wasn’t sitting up, let alone crawling on her own. Whenever Jaye-Jo tried to prop her up, she would flop over like a rag doll, completely unaware that the ground was rushing up to meet her. As a psychiatrist, Jaye-Jo trusted her instincts, even when pediatricians dismissed her concerns. Deep down, she knew something wasn’t right. Although her child was vocalizing, she was not verbalizing. However, it wasn’t until a speech-language pathologist suggested checking Shayna’s hearing that the pieces fell into place.
FINDING THE RIGHT CARE: THE HOUSE INSTITUTE CONNECTION
As soon as Shayna’s hearing loss was confirmed, Jaye-Jo sprang into action to find the best possible care for her daughter. Her quest led her to the House Institute, a pivotal moment that changed the trajectory of Shayna’s life. At House, they found expert medical professionals and a community dedicated to transforming hearing health. The specialists at House provided state-of-the-art diagnostics, fitted Shayna with hearing aids, and illuminated the path forward through education and support. They also introduced Jaye-Jo to other patients and their families, reinforcing that they were not alone.
A STEEP LEARNING CURVE
Nevertheless, Jaye-Jo found herself drowning in doubt. “She’s never going to hear birds sing. She’s never going to dance to the rhythm of music. She’s going to struggle to fit in,” she remembers thinking. But those fears, while valid, were only part of the story. What she didn’t know yet was that Shayna’s future would be shaped not by what she lacked but by the unyielding tenacity of a mother who refused to accept limits and would strive to rewrite the narrative of possibility.
For the first year of Shayna’s life, her ears were effectively “zero years old”—she had lost critical time that should have been spent absorbing sounds and speech. From that point on, every waking moment became a lesson. Jaye-Jo adopted an all-in approach to maximizing her daughter’s hearing experience. The hearing aids went in before she woke up and stayed in until after she fell asleep. Every toy in the house made noise, every room had visual aids, and every action was narrated out loud. Jaye-Jo fought for classroom accommodations, lobbied for carpeted floors and tennis balls on chair legs, and made sure teachers understood that Shayna’s silence didn’t mean she wasn’t listening. It meant she was processing.
But her commitment didn’t stop there. Helping Shayna catch up became a full-time mission. Jaye-Jo spent twenty-two hours a week shuttling her to various therapies as a young child. These included occupational therapy to help with fine motor skills, physical therapy to strengthen her core and balance, speech therapy to accelerate her language skills, and eventually a teacher for the deaf and hard of hearing. Every week was an exhausting cycle of appointments fueled by love and determination. “We had lost a year. I wasn’t going to let her fall further behind,” Jaye-Jo explains.
LESSONS FROM JAYE-JO FOR FAMILIES FACING HEARING LOSS
Through this tumultuous journey, Jaye-Jo learned invaluable lessons that she shares here for other families navigating similar trials:
Include the whole family. As a caring older sister, Jolie played an active role in Shayna’s life, helping with homework, assisting with speech therapy, and being a constant source of encouragement. Jaye-Jo made a concerted effort to ensure both of her daughters were included in joint activities, strengthening their bond while also giving each of them her undivided attention whenever possible. When siblings are actively involved in the journey of a child with hearing loss, it fosters stronger family ties and helps prevent feelings of isolation, jealousy, or resentment. Understanding the challenges and embracing a meaningful role in supporting their sibling with hearing loss creates a sense of unity within the family. Similarly, Shayna’s husband, Bruce, was 100% supportive. Although he worked extremely long hours to provide for the family and ensured his daughters had as many opportunities as possible, he also dedicated significant time to playing with Shayna, practicing speech-language techniques, and filling their home with warmth and connection. While this was precious bonding time for father and daughter, it also gave Jaye-Jo much-needed breaks to rest and recharge. “Teamwork is very important, and patience with each other,” advises Jaye-Jo. While certain periods inevitably put a strain on their marriage, Shayna acknowledges that they truly could not have raised their daughters without grace, commitment, and support for one another.
Acknowledge the grief process. It is normal for parents to grieve after a diagnosis. Recognizing and accepting emotions along the way helps families find the strength to move forward with positivity and purpose.
Use humor as a tool. Humor can be a powerful way to build resilience, especially when other children aren’t accepting or inclusive. Laughing together and using lighthearted moments to diffuse challenges can make the journey easier for both the child and their family.
Early intervention is everything. Consistency is key. The sooner a child has access to sound, the better their brain can develop auditory skills. “Your child needs to live in sound,” Jaye-Jo says. Wearing hearing aids or turning on cochlear implants sporadically isn’t enough; immersion is what builds language and comprehension.
Stick to good habits. Good habits lay a strong foundation for long-term success, whether it’s therapy routines, consistently wearing hearing devices, or taking on leadership opportunities at school to build confidence.
Encourage reading. Avid reading helped Shayna develop language skills and increase her access to vocabulary. Being a bookworm also supported her listening comprehension by increasing her ability to interpret context clues (for example, in conversations where she was unable to hear several words). Surrounding a child with books and cultivating a love for reading can enhance their ability to communicate and learn.
Own the hearing loss. Shayna learned to self-advocate early. Each year, with guidance from her mom, she met with her teacher and explained her hearing loss. Teaching children to effectively advocate for themselves empowers them to communicate their needs.
Find a community but define your own path. Jaye-Jo recalls a painful moment when some accused her of “changing” her child, likening cochlear implants to erasing a part of Shayna’s identity. But for her, it wasn’t about taking something away. It was about giving her daughter every possible tool to thrive. Seek support while recognizing that each family’s journey is unique.
Push for what your child deserves. Insurance battles, outdated school policies, dismissive professionals—Jaye-Jo encountered them all. She emphasizes, “If you don’t fight for your child, no one else will.”
BREAKING BARRIERS AND DEFYING EXPECTATIONS
Shayna didn’t just adapt; she excelled. Against the odds, she thrived in mainstream schools, danced on her high school’s song team, and became an exceptional student. At 15, she made the courageous decision that she wanted a cochlear implant. By then, technology had advanced, and she felt ready to embrace it. Dr. William Luxford, a House Clinic physician and the most prolific surgeon for pediatric cochlear implants, performed a successful procedure, and in little time, Shayna began to master a new way of hearing.
Several years later, Shayna and Jay-Jo reunited with Dr. Luxford in the OR to observe a surgery. While the impetus was curiosity, the result was conviction. In that poignant moment, all the struggles, sleepless nights, and persistent advocacy seemed to culminate in a singular realization. “I want to help others like me,” Shayna declared, her words filled with unshakable purpose.
After years of relentless hard work, Shayna has done what once seemed impossible: she has become a medical doctor. This year, she will conclude her Otolaryngology residency at Stanford University, solidifying her expertise in hearing health. As an ENT surgeon, she has become the same kind of specialist who once helped guide her journey, and today, she is the one who diagnoses, advocates, and provides solutions for others with hearing loss. What initially seemed like an insurmountable setback has blossomed into a story of hope and healing that ripples through the lives of countless others.
A CALL TO ACTION
For parents facing a new diagnosis, Jaye-Jo offers this advice: do everything you can as early as possible. Don’t wait. Push for answers. Seek support. And never let outdated assumptions dictate what your child can achieve. An estimated 48 million Americans live with hearing loss, and about 15% of school-aged children face some degree of hearing loss. We are so grateful to the donors and advocates who support this important work. Shayna’s story is a vivid reminder of what is possible when families have access to quality interventions and a community that believes in them. Every child deserves the chance to hear, learn, and reach their full potential.
Sometimes, the sound of determination is the most powerful melody in the world.
