Arlin
Ventricular Septal Defect and Atrial Septal Defect
Born with complex congenital heart defects, baby Arlin faced serious feeding and growth challenges within his first weeks of life. After a critical hospitalization and open-heart surgery at just nine weeks old, his journey became one of resilience, healing, and remarkable care. Read more to learn how Arlin and his family navigated this life-changing experience and found hope along the way.
Will
Transposition of the Great Arteries
Diagnosed with Transposition of the Great Arteries within his first 24 hours of life, Will underwent lifesaving open-heart surgery at just three days old. His early days were filled with intensive care, steady progress, and a devoted medical team guiding his recovery. Read more to hear Will’s family reflect on their journey and the compassionate care that carried them through the scariest moments.
Marta
Transposition of the Great Arteries
From being airlifted as a newborn with a critical heart condition to becoming a confident, thriving adult, Marta’s story is one of lifelong partnership and trust. After 25 years of care with the Herma Heart Institute, she reflects on how consistent, compassionate support shaped the life she leads today. Read more to follow Marta’s journey from her first hours to adulthood.
Ezra
Ventricular Septal Defect
Ezra’s heart journey began just days after birth with a surprise diagnosis—and continued through open-heart surgery as a toddler. Today, he’s doing great, balancing annual checkups with days spent swimming, fishing, and enjoying water parks. Read more to hear how clear communication, trusted providers, and ongoing support made all the difference for Ezra and his family.
Rayna
Total Anomalous Pulmonary Venous Return
Rayna’s heart condition went undetected until childhood, and the defect that once sustained her life ultimately led to lifesaving surgery and years of specialized care. Beyond repairing her heart, her journey has included support for learning, development, and overall well-being. Read more to see how a truly whole‑child approach helped Rayna find her stride.
Matthew and Emmett
Hypoplastic Left Heart Syndrome
Matthew and Emmett share more than a last name—they share an ongoing legacy of strength shaped by very different heart journeys. From a dad thriving in adulthood with congenital heart disease to a son courageously navigating early surgeries, their story highlights how care evolves across generations. Read more to see how the Herma Heart Institute supports this family at every stage of life.
Trinity
Holt-Oram Syndrome
Diagnosed before birth with a rare genetic condition and an even rarer heart defect, Trinity’s life has been shaped by extraordinary medical care from her very first days. After multiple open‑heart surgeries throughout childhood, her journey took an unexpected and serious turn in 2021. Read more to discover Trinity’s story of resilience, courage, and the fight that followed.
Eli
Loeys-Dietz Syndrome
Born premature and later diagnosed with the rare connective tissue disorder Loeys‑Dietz syndrome, Eli’s journey unfolded in ways no one expected. Closely monitored for his heart health, his story is one of adaptability, gratitude, and finding meaning in the unknown. Read more to see how unexpected challenges shaped a purpose‑filled path for Eli and his family.
Jack
Coronary Ostial Stenosis
What started as a routine check for a benign hemangioma led to an unexpected and rare heart diagnosis for baby Jack. Through thorough testing, expert guidance, and a deeply supportive care team, his family found clarity and confidence in his care plan. Read more to learn how early detection and trusted relationships shaped Jack’s journey.
Cassi and Steffi
Bicuspid Aortic Valve
Sisters Cassi and Steffi have shared nearly everything throughout their lives—including a congenital heart condition that has shaped their journeys in profound ways. From valve replacements to navigating multiple pregnancies with expert support, their story spans generations of care. Read more to discover how family, resilience, and lifelong monitoring come together in this unique sibling bond.
Kelly
Tricuspid Atresia
Born at a time when lifesaving options were limited, Kelly underwent a rare heart surgery that shaped the course of her life. Decades later, ongoing care and proactive management continue to support her health through new challenges. Read more to follow Kelly’s journey—from pioneering surgery to thriving adulthood with expert, compassionate care.
Anna
Hypoplastic Left Heart Syndrome
From lifesaving surgery as a newborn to becoming an adult inspired by science and discovery, Anna’s journey reflects what lifelong congenital heart care can make possible. Guided by the Herma Heart Institute every step of the way, her experience shaped not only her health—but her future ambitions. Read more to see how living with a heart condition helped spark a passion for cardiac research.
Bennet
Complete Atrioventricular Canal Defect
Bennet’s heart journey began before birth—but took a sudden, life‑threatening turn just days after coming home. What followed was an unexpected race against time, involving ECMO, emergency surgery, and ongoing specialized care. Read more to learn how expert intervention and close follow‑up continue to guide Bennet’s path forward.
Chase
Aortic Stenosis
Born with a complex heart condition, Chase has faced multiple surgeries—including fighting a serious heart infection that threatened his life. Through every setback, a full-circle approach to care helped him recover both physically and emotionally. Read more to hear Chase reflect on perseverance, healing, and the team that stood by him through it all.
Axl
Double Outlet Right Ventricle
Axl’s diagnosis at birth quickly turned into an urgent reality when he needed open‑heart surgery just weeks later. What followed was a journey marked by expert guidance, close monitoring, and a care team that helped steady an overwhelmed family. Read more to see how trust, connection, and ongoing care continue to shape Axl’s path forward.
Camberen
Dextrocardia
Born with a rare condition that put her heart on the opposite side, Camberen’s life has been defined by resilience, growth, and determination. After multiple surgeries and years of specialized care, she now lives boldly—proving that a congenital heart defect does not define limits. Read more to hear Camberen’s message of hope and her belief that “it gets greater later.”
Case
Wolf Parkinson White Syndrome
At just 11 months old, Case’s suddenly racing heart sent his family on an urgent journey to specialized care. What began as a frightening emergency ultimately led to answers—and a successful procedure that restored his heart to a normal rhythm. Read more to see how timely expertise and follow‑up care helped Case get back to being himself.
Kaylee
Kawasaki Disease
After days of high fevers and a sudden rash, Kaylee’s family found themselves racing for answers—and expert care. What followed was a compassionate, careful evaluation that brought reassurance and lasting peace of mind. Read more to learn how tenderness, trust, and follow‑up care helped Kaylee and her family through a frightening experience.
