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Cincinnati Children’s Shines Light on Need for More Child-Specific Heart Devices

The health system is part of a collaboration of institutions sharing their efforts to bridge this gap during American Heart Month

Thursday, February 15, 2024

Cincinnati Children’s is part of a collaboration addressing the need for more cardiac devices tailored specifically for children. Currently, physicians largely need to adapt adult-sized FDA-approved devices for their smaller patients, which can cause children to endure prolonged hospital stays, or in some cases live their entire lives tethered to monitors. Thankfully, health systems like Cincinnati Children’s are at the forefront of transforming the landscape of pediatric heart care and pioneering research to deliver essential treatments for young hearts in need.

Cincinnati Children’s helps lead the Advanced Cardiac Therapies Improving Outcomes Network (ACTION), a collaboration of 66 premier heart failure hospitals nationwide. Comprising physicians, nurses, patients, families and researchers, ACTION is devoted to solving the critical gap in pediatric heart care and building a tomorrow where pediatric medical devices are available to address children’s health needs. With Cincinnati Children’s help, ACTION has advocated for and achieved expanded FDA labels for pediatric heart devices, changed care models to decrease complications nationwide and improved education to ensure the safety of our patients.

“The solution to this profound issue is within our grasp; what we lack are the necessary resources,” Angela Lorts, MD, director of Cincinnati Children’s Ventricular Assist Device (VAD) Program and co-executive director of ACTION says. “These young hearts deserve tailored devices, and we are working to bridge the gap between aspiration and actuality to ensure pediatric patients have access to cutting-edge devices crafted specifically for them.”

ACTION uses real-world data from its collaborative institutions to advocate and improve the availability of critical pediatric therapies. This data allows for safety and outcome reviews and has even led to FDA approval of expanded labels for devices, which is paramount to improving availability for children everywhere.

Patients like Brynn (pictured), who was diagnosed with heart failure prior to her second birthday and placed on a VAD, are experiencing better outcomes because of these advancements. Brynn’s VAD, which was designed for a patient her size, kept her heart pumping until she received a life-saving heart transplant. Her mom, Kristyn, refers to her daughter as, “a poster child for VADs” who is now living her best 4-year-old life with no major complications.

"As we reflect on the journey, American Heart Month spotlights persistent challenges," Lorts says. "Beyond celebrating achievements, we recognize a critical need for tailored medical devices for children.

About ACTION

ACTION (Advanced Cardiac Therapies Improving Outcomes Network) is a global organization dedicated to enhancing outcomes for heart failure patients, with a particular focus on children. Since 2017, ACTION has fostered international collaboration among patients, families, clinicians, researchers, payors, and industry stakeholders. Based in Cincinnati, OH, ACTION employs a quality improvement and research-based approach, uniting 66 network sites and 1,185 members to share data, develop solutions, and drive innovations. Discover more at www.actionlearningnetwork.org.