Board member spotlight Jason and Susan Smith

Jason and Susan’s journey: Advocating for children with congenital heart defects (CHD)

Jason and Susan Smith's advocacy for children with congenital heart defects (CHD) began after their daughter, Emerson Rose, was born with hypoplastic left heart syndrome (HLHS), a condition diagnosed during a routine 20-week ultrasound. HLHS affects the left ventricle of the heart, requiring their daughter, Emerson Rose to undergo multiple open-heart surgeries. Despite her challenges, Emerson Rose’s strength and spirit shone brightly during her 76 days of life. 

Though their time with Emerson Rose was brief, the impact she left on their lives was profound. During their time in the MUSC Shawn Jenkins Children’s Hospital, the Smiths witnessed the resilience of families in the pediatric intensive care unit (ICU).

Emerson Rose’s legacy: The Emerson Rose Heart Foundation

“Inspired by Emerson Rose’s strength and legacy, we knew we had to help others facing similar challenges,” said Susan Smith. In memory of their daughter, Jason and Susan founded the Emerson Rose Heart Foundation, a nonprofit dedicated to advancing CHD research, providing family support, and funding initiatives that improve the care of children with heart defects. 

Joining the MUSC Children’s Hospital Fund Advisory Board

The Smiths’ connection with the Children’s Hospital Fund (CHF) Advisory Board began in 2014 when MUSC pediatric cardiologist Eric Graham, M.D.,  invited them to join. Eager to make a difference, the Smiths accepted the opportunity and have since become pillars of support in improving the future for children born with CHD.  

“Jason and Susan Smith are truly exceptional human beings,” Graham said. “They took every parent’s worst nightmare and made something amazing from it. Their partnership with the MUSC Shawn Jenkins Children’s Hospital has been transformative, as they contribute to every aspect of the heart program, from quality and clinical outcomes to research, education and advocacy.” 

Making an impact: Over $700,000 raised for CHD research and initiatives

Jason and Susan’s dedication to CHD research and treatment has raised more than $700,000 for the MUSC Shawn Jenkins Children’s Hospital. Through the Emerson Rose Heart Foundation, the Smiths have funded 19 initiatives that support both the hospital and the families of children with CHD. 

One of their most significant contributions has been the creation of a protocol for treating chylothorax, a condition where fluid from the lymphatic system leaks into the space around the lungs. This protocol has become the standard of care at children's hospitals across the country.

The Smiths also funded statewide training on automated external defibrillators (AEDs), a crucial tool in saving lives during sudden cardiac arrest. 

“Perhaps one of the most meaningful initiatives we’ve been a part of has been the funding of the simulation lab at the MUSC Shawn Jenkins Children’s Hospital,” said Jason Smith. “This state-of-the-art lab allows medical staff to practice lifesaving procedures on a baby manikin connected to Bluetooth technology, improving team performance and minimizing mistakes in high-pressure situations.” 

Looking to the future: The Emerson Rose Heart Foundation’s growth

Looking ahead, the Emerson Rose Heart Foundation is poised for even greater impact with the addition of a full-time executive director and dedicated staff. Jason and Susan’s ultimate goal remains clear and profound: to continue changing lives in honor of their daughter. 

“Our faith and trust in God’s plan for Emerson Rose and our family guide our work,” said Susan Smith. “We are determined to continue honoring her legacy with every step we take.” 

Changing lives through hope, faith and collaboration

As members of the Children’s Hospital Fund Advisory Board, Jason and Susan Smith are helping to advance medical care for children with CHD while fostering a sense of community among those dedicated to improving the lives of vulnerable children. Their mission, rooted in hope and faith, drives them to change what’s possible, one child at a time.