Mayo Clinic's Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome and Ochsner Hospital for Children are collaborating within a consortium to provide solutions for patients with hypoplastic left heart syndrome (HLHS), a rare and complex form of congenital heart disease in which the left side of the heart is severely underdeveloped.
The consortium aligns regional centers and an advocacy group into a collaboration led by the Hypoplastic Left Heart Syndrome Program at Mayo Clinic to accelerate innovation and discovery sciences, as well as bring clinical trials and expertise to patients across the country.
Ochsner's Pediatric and Adult Congenital Cardiac Surgery Program is led by Benjamin Peeler, MD, who joined Ochsner's team in 2016. Peeler is a board-certified congenital cardiac surgeon who previously served as the chief of pediatric and adult congenital cardiac surgery at Levine Children's Hospital in Charlotte, North Carolina.
"Dr. Peeler has been building a team of dedicated professionals, and their work has resulted in a 100% survival rate of the complex Norwood surgery every year since 2017," said Tim Nelson, MD, PhD, director of the HLHS Program at Mayo Clinic. "They are passionate about ensuring that all families in Louisiana have access to the best level of surgical care which is why we're so proud to welcome them to the HLHS Consortium."
"Our team has worked tirelessly to ensure that families in the Gulf South have access to exceptional and nationally recognized healthcare close to home," said Peeler. "We're honored to collaborate with the HLHS Program at Mayo Clinic to bring even more resources and research to our patients. As the only member of the consortium in the South, our program's continued growth will benefit thousands of patients in our region and beyond."
There are now eight members in the Hypoplastic Left Heart Syndrome Consortium. Seven are hospitals and one is an advocacy group for patients and families. Ochsner Hospital for Children joins Mayo Clinic, Children's Hospital of Philadelphia, Children's Hospital Los Angeles, Children's Minnesota, Children's Hospital Colorado, and The Children's Hospital at OU Medicine in expanding the development of cell-based innovative research opportunities for people living with HLHS.
Sisters by Heart is a founding member of the Hypoplastic Left Heart Syndrome Consortium. This advocacy group was started by mothers who came together to support families on their journeys with children who have HLHS. A focus of their mission is to send care packages to parents of a child newly diagnosed with hypoplastic left heart syndrome, connecting them to a network of resources from birth through recovery.
"Advocacy groups like Sisters by Heart are vital to strengthening our consortium," said Nelson. "They ensure that our patients and families have a seat at the table, and can bring awareness and provide support on a person-to-person level that institutions cannot."
All consortium sites will participate in a phase II clinical trial using stem cells from a baby's own umbilical cord blood in regenerative therapy. During the second of three surgeries to repair the heart, stem cells are injected into the heart muscle to help it grow stronger, and delay or prevent the need for transplant. The trial is open at all consortium sites, and Ochsner Hospital for Children already has collected cord blood with stem cells waiting to be used for a patient when the trial opens this fall.