How the Heart Institute at Rady Children’s helps kids with complex heart conditions thrive
Long before a newborn draws that first breath, the heart is already hard at work, beating through a remarkable beginning.
For some families, though, the story starts with an unexpected hurdle. Congenital heart defects are the most common birth defects in the U.S., affecting close to one out of every 100 babies. Some are minor and manageable; others are among the most challenging diagnoses pediatric cardiologists face.
That’s where Rady Children’s Hospital San Diego steps in.
Counted among the country’s top pediatric heart programs by U.S. News & World Report, the Heart Institute at Rady Children’s combines clinical expertise, advanced technology and steady, family-centered care. Patients range from fragile newborns who need urgent surgery to teens, and even adults, who are learning to live with heart conditions that don’t end after childhood. Each year, thousands of families from across Southern California, and well beyond, come through its doors.
“TO HELP EVERY CHILD DEVELOP RESILIENCE, FIND JOY AND BECOME THE FULLEST VERSION OF WHO THEY ARE MEANT TO BE.”
A TEAM BUILT AROUND EACH CHILD
What sets the Heart Institute apart is the closeness of the teamwork.
Cardiologists and cardiovascular surgeons coordinate with specialized critical care physicians called cardiac intensivists, plus imaging experts, nurses, nutritionists, social workers, psychologists and other professionals to design a plan that fits one child, one family, one situation. Parents often describe it as being supported by a full team that stays with them from one step to the next.
Innovation is part of the Heart Institute’s rhythm, too. Rady Children’s became the first hospital in San Diego to create a 3D Heart Modeling Program, allowing physicians to rehearse complicated procedures on realistic heart replicas. It also led the way globally by performing the first nonsurgical, catheter-only procedure in a patient with single-ventricle congenital heart disease.
Progress like this helps teams take on the most complex cases while lowering risk and improving results for all patients.
WHEN HALF A HEART DOES THE WORK OF TWO
Among the conditions requiring specialized care at the Heart Institute are single-ventricle heart defects.
In most hearts, two ventricles share the job of pumping blood to the rest of the body. With single ventricle conditions, however, only one main pumping chamber develops to function properly.
Diagnoses in this group include hypoplastic left heart syndrome, tricuspid atresia, double-inlet left ventricle, and other rare congenital defects.
For many families, care for these types of conditions begins before birth. Shylah Haldeman, nurse practitioner with both the Hospital’s Home Monitoring and Single Ventricle programs, is part of the team and helps families understand what to expect and prepare for the journey ahead.
Care is rarely a one-time fix. Many children need staged surgeries during infancy and childhood. And even when surgery goes well, follow-up lasts a lifetime because single-ventricle physiology can influence more than the heart by affecting several organs and body systems over time.
During the especially vulnerable period between the first and second surgeries, the Home Monitoring Program, founded and directed by pediatric cardiologist Jessica Haley, MD, provides multidisciplinary care while partnering with families at home. Home monitoring has helped transform outcomes during a period that historically carried significant risk for babies with single-ventricle heart disease.
For comprehensive, long-term support, families trust the Hospital’s Single Ventricle Program, one of the first of its kind on the West Coast. Established in 2020, the multidisciplinary program brings specialists together to support children with single-ventricle heart defects throughout childhood and into adulthood.
LOOKING BEYOND THE HEART
For José A. Silva Sepúlveda, MD, the pediatric cardiologist who founded the Single Ventricle Program, single-ventricle care means focusing on the whole child and family, not just on a single organ.
“We believe every child has inherent dignity and is so much more than a diagnosis,” Dr. Sepúlveda says. “Caring with empathy, building meaningful relationships and truly knowing our patients and families are the first steps in walking alongside them through this lifelong journey. Our hope is to help every child develop resilience, find joy and become the fullest version of who they are meant to be.”
For the entire Single Ventricle Program team, that care is also personal.
The clinic unites specialists across cardiology, pulmonology, kidney and liver health, nutrition, neurodevelopment, psychology and social work. Instead of families bouncing between separate appointments and trying to stitch guidance together afterward, the team aligns recommendations and delivers broader care during a single visit.
This structure helps the group track and address issues that can develop with time, including rhythm problems, developmental delays, liver disease, kidney changes and behavioral or emotional concerns. That means the team can step in earlier and support long term health and day-to-day quality of life.
A distinctive part of the program is its integration with UC San Diego’s Adult Congenital Heart Disease Fontan Clinic. The pediatric and adult teams work together to prepare patients for a coordinated transition, extending specialized single ventricle care from childhood into adulthood.
SUPPORT DOESN’T STOP AT MEDICAL CARE
Families in the care of the Single Ventricle Program also have access to education, emotional support and opportunities to connect with others who understand their experience. The annual Single Ventricle Family Day and Family Conference bring patients, caregivers and clinicians together so families can learn from the experts, share stories and feel less alone.
These events are designed to empower families, build community and help patients connect with others at different stages of their journeys.
ADVANCING THE FUTURE OF HEART CARE
Innovation at the Heart Institute doesn’t end at the bedside. Clinicians and researchers keep striving to understand congenital heart disease more clearly and improve treatment options. The Institute takes part in numerous research efforts and relies on advanced tools, such as image-guided interventions, high-level cardiac imaging and 3D modeling, to strengthen care.
Work like this is expanding what’s possible for children born with complex heart conditions. Rady Children’s believes every child should have the chance to grow up strong and look ahead to a healthier future.
“RADY CHILDREN’S BELIEVES EVERY CHILD SHOULD HAVE THE CHANCE TO GROW UP STRONG AND LOOK AHEAD TO A HEALTHIER FUTURE.”