When a rare heart condition demands extraordinary care
The Texas Center for Pediatric and Congenital Heart Disease brings advanced care close to home for Central Texas families
Written by: Lily Vining
When Temple, Texas, residents Josh and Yesenia Arouh learned that their son would be born with Shone’s complex — a rare congenital heart condition that affects multiple structures on the left side of the heart and often requires several surgeries — they had no idea that a team of subspecialists was only an hour away, ready to give CJ the advanced care he would need from the day of birth.
Led by Charles Fraser, Jr., M.D., a board-certified congenital heart surgeon and chief of pediatric and congenital heart surgery, UT Health Austin’s Texas Center for Pediatric and Congenital Heart Disease, a clinical partnership with Dell Children’s Medical Center, is known nationwide for treating the most complex pediatric heart conditions.
“Children like CJ frequently require more than a single procedure,” Fraser says. “ These complex children require a coordinated team to care for them in every stage of their journey, from diagnosis to surgery to long-term follow-up. That level of integration is exactly what this partnership was built to provide.”
A team built for the most complex heart conditions
Because CJ’s diagnosis was made in utero, a comprehensive care plan was already taking shape that brought together experts in pediatric cardiology, congenital heart surgery and critical care, supported by specialists focused on nutrition, development and family support.
Alongside Fraser, the Arouhs were guided by Eileen Stewart, M.D., board-certified pediatric and fetal cardiologist and medical director of the IMPACT Single Ventricle Program . Stewart helped the family understand the road ahead and grounded them when the diagnosis felt overwhelming.
“She told us the most important thing we could do was be CJ’s mom and dad,” his father says. “The rest — the monitors, the medicine, the decisions — that was the team’s job.”
That message mattered. It allowed CJ’s parents to focus on loving their child while trusting a group of physicians and specialists who care for children like CJ every day.
7 months of care, delivered as one team
In CJ’s first six months of life, he had three surgeries. Throughout all the procedures, progress and setbacks, CJ’s care was never fragmented. Physicians and bedside teams remained closely aligned, adjusting plans together as his condition evolved.
Daily rounds brought clinicians and CJ’s parents together at the bedside. Questions were encouraged. Concerns were addressed. Decisions were made collaboratively, with the family treated as partners in care.
“At the Texas Center for Pediatric and Congenital Heart Disease, no one works in isolation,” Fraser says. “Our teams are aligned around a single goal: giving each child the best possible future. That collaboration allows us to take on the most complex cases with confidence and to give patients and families hope.”
Seven months in the hospital were filled with uncertainty, but they were also filled with expertise, coordination and steady reassurance from a team committed to CJ’s future. Today, his laughter fills his home, a sound his parents once feared they might not hear.
