HLHS Consortium Builds Team Approach for Surgical Care

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Jul 19, 2019 | Brianna N. Tranby | @briannatranby

Mayo Clinic is a world-renowned, non-profit hospital with a history of pioneering groundbreaking medical practices for congenital heart disease, including development of the first successful heart-lung machine and open-heart surgeries.  Over the past five years, Mayo Clinic has been focused on building a nationwide, research-focused Hypoplastic Left Heart Syndrome (HLHS) Consortium to develop the next generation of optimal treatments for all HLHS patients.

Collaboration among care providers, researchers, and educators helps improve outcomes for individuals with HLHS.  Each member brings strengths to the consortium to create a rigorous and strategically-balanced partnership that helps families across the country access the high-quality resources they need.

As of July 1, Mayo Clinic has decided to collaborate with Children's Minnesota for the initial surgical care of HLHS patients whose families wish to receive care in Minnesota.  Combining our current volume of patients with those of Children’s Minnesota can be expected to improve outcomes for infants undergoing this complex surgery.

Mayo Clinic will work with Children's Minnesota for cell-based therapy in neonatal surgery, and will continue to provide diagnostic, subsequent, and ongoing clinical care for patients with HLHS at which Mayo excels.  Mayo Clinic will also continue to pioneer cell-based therapy research through the HLHS Consortium.

Finding the Right Hospital for Your HLHS Needs

The medical care for HLHS is complex and requires several surgeries after birth and in early childhood.  As children with HLHS age, their medical and surgical needs change, and the types of procedures they may need also change.  For example, older patients may need valve replacement, re-replacement, or heart transplant.

Although choosing a hospital or provider may be impacted by insurance or finances, overwhelming research has shown that centers which perform a high-volume of procedures have significantly better outcomes than low-volume centers.  Your provider should be willing to have an open, honest discussion with you about the care your child needs and the center’s outcomes – and you should advocate to get the information you need to feel comfortable to make an informed decision.

Please contact us at HLHS@mayo.edu for information about Mayo Clinic’s expertise as well as options within the HLHS Consortium.