This Heart Month, we’re honoring Ezra, a 10-year-old whose strength and resilience have inspired everyone around him. Diagnosed with Hypoplastic Left Heart Syndrome before birth, Ezra has undergone three open-heart surgeries. Through it all, his determination to live life to the fullest continues to shine.
Ezra’s curiosity and strength shape his journey
Ezra is a curious, adventurous child who loves reading, crafting and visiting Disneyland.
His dad, Jaysen, said, “Ezra has always been a happy child, and as someone who was born with a disability, he hasn’t known life without it. I think this has helped shape his outlook on life and has contributed to his resilience, even during the toughest times.”
Before Ezra was born, his parents learned there was a concern with how his heart was developing.
Ezra’s lifesaving open-heart surgeries
Doctors diagnosed Ezra with hypoplastic left heart syndrome (HLHS), a rare congenital defect that disrupts normal blood flow and occurs when the left side of the heart doesn’t develop properly.
During his mom Yadalle’s labor, doctors couldn’t detect Ezra’s heartbeat, prompting an emergency C-section.
At just three days old, they transferred him to the neonatal intensive care unit (NICU) at CHOC. Two days later, he underwent open-heart surgery.
Ezra’s surgeries didn’t stop there. At 5 months old, he underwent another surgery that lasted nearly 9 hours. A third surgery followed, lasting more than 12 hours.
Ezra’s understanding of his heart condition
Ezra’s curiosity and drive to understand have led his parents to be open with him about his heart condition and health. They’ve explained why he needs to make certain adjustments, offering him transparency from a young age. As he has grown, this openness has helped him understand things like why he gets winded easily, needs to be cautious when he’s sick, and why wearing a mask during flu season is important.
Ezra’s journey through hospitalization and multiple diagnoses
In 2023, Ezra was hospitalized at CHOC with a possible case of endocarditis, a rare inflammation of the heart. The condition led to an enlarged spleen, requiring visits with gastroenterology and urology specialists.
Ezra later contracted rhinovirus, requiring care from the pulmonology department. Due to his illness, he was hospitalized at CHOC and placed in isolation to protect him from additional infections, given his compromised immune system.
Ezra recently turned 10. He’s now facing a fourth heart surgery and has been diagnosed with ADHD and autism.
Ezra’s encouragement during hospital stays
Ezra’s dad shared that one of Ezra’s biggest sources of encouragement is knowing that after each procedure, he gets to heal and regain the freedom to run around and enjoy his childhood.
Visits from Lois, CHOC’s first resident dog who loves belly rubs, also lift Ezra’s spirits during hospital stays. An avid reader, Ezra enjoys borrowing books from the Family Resource Center on the second floor of the Bill Holmes Tower. His favorites are Dog Man and books from the Cat Kid Comic Club.
Gratitude and giving back
Ezra’s parents are grateful for how the CHOC team has gone above and beyond to support them. They’re thankful they don’t have to travel out of state for care and feel fortunate to receive everything they need at CHOC. Jaysen said, “Dr. Nafiz Kiciman, for example, has been our pediatric cardiologist from the very beginning. We even met with him before Ezra was born. Throughout it all, he’s been absolutely fantastic.”
Eager to give back, Ezra and his parents have participated in the CHOC Walk every year since 2019. Ezra loves the event and gets excited to join each year.
Strength in support
Ezra’s parents find strength and optimism through their strong support system. They connect with other parents and are open about Ezra’s condition, emphasizing that it’s nothing to be ashamed of. They are always willing to reach out for help or advice.
Yadalle, Ezra’s mom said, “We have to be strong for Ezra. So you just gather up the courage within.”
Ezra’s parents hope for a long, fulfilling life for him. If you ask Ezra about his future, he’ll likely tell you he wants to go to space, build rides for Disney, or become a doctor.
Ezra’s dad, Jaysen, has a message for caregivers: “Never lose hope. It can get tough, but it’s important to keep your faith in the doctors and nurses, and more importantly, in yourself and your child. You must believe that, above all else, your child will have a better life because of the care they’re receiving. We love CHOC and the resources they offer, and we’ll continue to visit as long as we’re nearby!”
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Learn more about CHOC’s Heart Institute
CHOC Hospital was named one of the nation’s best children’s hospitals by U.S. News & World Report in its 2024-25 Best Children’s Hospitals rankings and ranked in the cardiology and heart surgery specialties.
