Retro Riley: One young girl, one courageous heart

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03/17/2022

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In honor of Women’s History Month, we spotlight Bailey Hunsberger, one of the early Riley patients to receive the Berlin Heart.

Bailey Hunsberger lived all her life with a courageous heart. Born in 1992 with aortic stenosis, a defective aortic valve that allowed blood to back up into her lungs, Bailey was only 3 days old when Riley Hospital Heart Center surgeon Dr. John Brown performed her first open heart surgery. She was only 4 years old for her second, again done by Dr. Brown.

Both surgeries bought Bailey time and a chance for a happy, normal life up until 2005 when her heart began to fail. There were not too many options at that point for Bailey – another surgery to remove scar tissue, and if that didn’t work, a heart transplant. Riley heart surgeon Dr. Mark Turrentine saw one more possibility – a Berlin Heart.

Developed in Germany, the Berlin Heart – a 15-ounce mechanical pump – would give Bailey’s heart and lungs a chance to rest until she was strong enough for a transplant. The ventricular assist device (VAD) restores normal blood flow and acts as the heart’s main pumping chamber.

Riley surgeons opened Bailey’s chest, removed the scar tissue in her heart and attached the device. The pumping chamber stayed outside Bailey’s body, where she was able to watch her blood moving to and from her heart. Bailey predicted to her doctors: “I think I know what's gonna happen. I think I'm gonna need the Berlin Heart and they're gonna put me on it and my heart is gonna get better, and they're gonna take me off it." And she added, “I'm gonna help lots of kids in the process.”

Wouldn’t you know, Bailey was right. The 12-year-old was hooked up to the Berlin Heart for 162 consecutive days at Riley Hospital. And then, Dr. Turrentine called her family together to deliver news nothing short of a miracle: Bailey’s heart and lungs had healed enough to take her name off the heart transplant list. A few days later, the Riley Heart Center team removed the mechanical device, and Bailey’s heart began beating on its own.

Bailey's childhood photo

Bailey’s courage throughout this process was chronicled in an award-winning documentary, “Heart to Heart.” Bailey described the Berlin Heart in the film this way: “It’s breakthrough medicine that will help a lot of people with my condition.”

The documentary sparked awareness and action on behalf of children for access to medical technology and devices to save their lives and helped set into motion a multicenter clinical trial at nearly a dozen leading children’s hospitals (including Riley Hospital for Children) to evaluate use of the Berlin Heart with pediatric patients.

In 2011, when Bailey was a sophomore at Indiana University, she and her family and a team from Riley Hospital’s Heart Center testified at the FDA hearings, which ultimately led to FDA approval of the Berlin Heart. When Bailey got the call from Riley that the Berlin Heart had been approved, she said, “That was the most exciting thing I’d heard in a very long time. It felt like an early Christmas gift.”

Bailey continued to live her life with a courageous heart and desire to help all children through pediatric research. After graduating from Indiana University with a degree in microbiology, she launched her career as a microbiologist at Riley Hospital’s Herman B Wells Center for Pediatric Research. She joined colleagues there in carrying out research and as a co-author on several publications.

Dr. Troy A. Markel, director of Pediatric Surgical Research at Riley Hospital for Children, recalls Bailey, the first technician he hired for his lab: “She was enthusiastic about her job and took great pride in her work. She often mentioned that this pride came from the abundant research that others did before her to save her life, and she was hoping to be able to provide the same benefit to other children.”

Bailey married U.S. Marine Cpl. Lance Worthen in 2015. Two years later, at the age of 25, she passed away.

Bailey’s courageous heart lives on in the memories of her family and friends and in those patients whose lives she helped save. Her story is a testament to the courage of Riley Hospital patients and their families and to the caring and expertise of the medical team. Today, many children throughout the United States and the world have been able to benefit from lifesaving outcomes through the use of the Berlin Heart.

Research by Riley Hospital Historic Preservation Committee

Photos courtesy of Riley Children’s Foundation and Robert Rothrock, Visual Media/IU School of Medicine

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