CHD Spotlight: Steven Larson

Baby Steven recovering in the intensive care unit after open heart surgery.

Paying it forward: A childhood heart patient donates to help expand heart care for children worldwide

At birth, Steven was diagnosed with congenital heart disease (CHD) – specifically, total anomalous pulmonary venous return (TAPVR) and pulmonary vein stenosis (PVS) – and would require open heart surgery as a newborn. In patients with TAPVR, the four veins that bring oxygen-rich blood from the lungs back to the heart do not connect normally, sometimes attaching to other blood vessels or to the wrong part of the heart. Additionally, PVS causes the walls of these veins to thicken, making the vessels narrower and restricting normal blood flow. In short, babies born with this form of CHD can’t get enough oxygen to their bodies. If not operated on within the first year of life, their conditions worsen rapidly and they die.

Steven was born and raised in Illinois. His parents were constantly worried about his health, and the family “never had a calm moment.” Fortunately, Steven received excellent cardiac care at some of the best congenital heart programs in the world. After undergoing five (yes, five!) open heart surgeries by the age of three, Steven’s condition was relatively stable: for over a decade thereafter he did not require open heart surgery.

For most of his life, Steven has been under the watchful eye of pediatric cardiologist Frank Cetta, MD – Heart to Heart’s Board President and longtime medical volunteer. When Steven turned 16, Dr. Cetta noticed Steven’s condition had begun to change – his pulmonary veins had narrowed significantly, a potentially dangerous situation. Dr. Cetta referred him to surgeon Harold Burkhart, MD at the Mayo Clinic for Steven’s sixth open heart surgery: his heart has been functioning well ever since. Timely diagnosis and surgical care, once again, saved Steven’s heart from deteriorating.

Over the years, Steven and Dr. Cetta developed a friendly patient-doctor connection. Dr. Cetta often spoke to Steven about volunteering with Heart to Heart, about his trips to Russia to mentor aspiring pediatric cardiac specialists struggling to care for children born with CHD. In high school, Steven began to learn more about Heart to Heart’s history and mission. He understood personally – and deeply – the need to expand access to heart care for children worldwide. In 2018, at the age of 22, Steven began donating monthly to Heart to Heart.

“Just because I was born where I was born doesn’t mean other kids shouldn’t get that same opportunity for heart care.”

Lifelong CHD patient and Heart to Heart supporter, Steven Larson.

After graduating from high school, Steven went on to study supply chain management technology at Purdue University in Indiana. He currently works for Illinois Tool Works as a buyer, purchasing a wide range of parts and tools sold to companies like Home Depot and Lowes. Steven lives in his hometown of Bensenville and spends much of his free time with his family. He has a close relationship with his parents – his relentless advocates and loving caregivers when he was in and out of the hospital for surgeries as a small child.

Steven understands firsthand what it’s like to need surgical treatment for a life-threatening heart defect. He knows that many children are dying of treatable heart conditions, some with the same heart defect that he was born with. Steven is saddened by the fact that the vast majority of children born with CHD around the world do not have access to open heart surgery at all.

“If it weren’t for them, I wouldn’t be here right now.”

Steven remains grateful to all of the doctors and nurses who have been a part of his heart health journey. He often shares his appreciation for his cardiac team because “if it weren’t for them, I wouldn’t be here right now.” It has now been over nine years since Steven’s heart required any type of surgical intervention. Dr. Cetta continues to monitor him, performing follow-up examinations every other year.

Heart to Heart is so grateful to have a supporter like Steven, whose story shines a spotlight on the importance of children having access to life-saving heart surgery while they are still operable. Steven’s story of a child’s life saved thanks to timely heart care underscores the need for us to continue carrying out our global mission to ensure that children and adults – in the U.S. and all over the world – all have access to the heart care they need and deserve.