Rare Daily Staff

Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome and The Children’s Hospital at OU Medicine are collaborating within a consortium to provide solutions for patients with hypoplastic left heart syndrome, a rare and complex form of congenital heart disease.

Hypoplastic left heart syndrome (HLHS) occurs during fetal growth when the heart is developing. The cause is unknown, and it cannot be prevented. In HLHS, the left side of a child’s heart—the left ventricle, ascending aorta, and left heart valves—is severely underdeveloped.

The condition results in a heart with only a single functional ventricular chamber—the right ventricle—and a small ascending aorta. In a properly developed heart, the right-side pumps blood to the lungs, while the left side pumps blood to the rest of the body. In newborns and children with HLHS, the right side of the heart is forced to pump blood to both the lungs and the rest of the body. HLHS treatment generally requires a series of surgeries.

The Children’s Hospital at OU Medicine has been involved with the hypoplastic left heart syndrome program since 2015 and performed its first umbilical cord blood cell delivery in 2016.

“We’re thrilled that they’ve joined the HLHS Consortium because it means that individuals with HLHS will now have more access to participating in groundbreaking clinical trials,” said Timothy Nelson, director of Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome.

The consortium aligns regional centers into a collaboration led by the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome at Mayo Clinic to accelerate innovation on hypoplastic left heart syndrome, discovery sciences and clinical expertise by investing local resources back into research.

Nationwide, this brings the total number of HLHS Consortium members to six: Mayo Clinic, Children’s Hospital of Philadelphia, Children’s Hospital of Los Angeles, Children’s Minnesota, Children’s Hospital Colorado, and The Children’s Hospital at OU Medicine. The collaboration is expanding the development of cell-based, innovative research opportunities to transform the lives of people living with hypoplastic left heart syndrome.

Harold Burkhart, who leads the pediatric cardiothoracic surgery team at OU Medicine, said being a member of the HLHS Consortium establishes Oklahoma as a regional center for families to receive care closer to home.

“Families of children with heart anomalies want to know that we’re not just resting where we are. We need to keep pushing forward to come up with newer treatments,” Burkhart said. “This collaboration provides new hope for patients and it is the epitome of a bench-to-bedside research project.”

Photo: Timothy Nelson, director of Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome

X