Donors fuel innovation and life-saving technologies for children with heart failure

On the softball field, Hope is a force to be reckoned with. A bubbly student whose sense of humor sparks laughter wherever she goes, the 13-year-old athlete never would have guessed she’d go from hitting a triple in June to needing a new heart just a few months later.     

It all started with a cough. Though Hope had no other symptoms, the persistent dry cough seemed more concerning than your typical bug. It caused pain in her chest and affected her ability to run the bases.

Stephanie, Hope’s mom, trusted her daughter’s instincts that something wasn’t right. She took Hope to their local urgent care after a Saturday game, and the doctor there immediately sent them to Cincinnati Children’s.

Hope had no idea that her life was about to change forever.

A Life-Changing Diagnosis

It turned out Hope’s cough was caused by a virus, and that virus was attacking one of her most vital organs. She was diagnosed with myocarditis—an enlargement of the heart.

Stephanie and Brad, Hope’s dad, were shocked by the news. Their daughter went from being a perfectly healthy athlete one day, to dealing with serious heart issues the next. 

“We did all the right things when she started feeling sick,” Stephanie recalls. “It came from out of nowhere, and there was no prevention for it. It was a lot to process.”

But Hope and her family found comfort in the world-class care they received from the experts at our Heart Institute, which is consistently ranked among the top pediatric cardiology programs in the nation.

Hope’s care team implanted a pacemaker in the fall to help regulate her heartbeat. Believing she was in the clear, her parents focused on helping their daughter adjust to a new normal. But during the weekend of Thanksgiving, things took an unexpected turn for the worse.   

“Over fall break, Hope became really ill. She wasn’t eating, and she was throwing up. I made a call and her doctor told us to bring her in right away. That’s when she was diagnosed with full heart failure,” Stephanie says, tears welling in her eyes. “The only thing that would save her was a transplant.”

The Heart of Innovation

Hope spent the holidays in the hospital, waiting for the transplant she desperately needed. To help bridge the time until a donor heart was available, she underwent surgery to get a ventricular assist device (VAD), a mechanical system that helped keep her heart pumping. 

While VADs are typically used in adults with heart failure, our experts were the first in the country to implant a new and improved type in children. With the help of virtual technology, our surgical team is able to practice and learn how to fit the device into patients who are smaller in size, like Hope.

After she received the VAD, Hope’s quality of life improved dramatically. She could breathe easier and had a lot more energy. And because she could carry the batteries and controller in her backpack, she was able to be away from home and do more with friends and family.

Cincinnati Children’s was among the first to explore new ways to help pediatric heart patients, who before had little to no hope. This work includes pioneering innovations like VADs.

We continue to move the needle in advancing treatment for cardiovascular conditions by collaborating with researchers and physicians from around the globe—improving outcomes and quality of life for more and more kids.

A Bold New Venture 

It’s our tireless pursuit to transform care through innovative technology that inspired Additional Ventures—a California-based foundation—to support our work with a generous gift. Their sole focus is to help children with heart defects live longer, healthier lives by accelerating research toward cures for these devastating conditions.

Additional Ventures is partnering with us to support a game-changing learning network called the Advanced Cardiac Therapies Improving Outcomes Network (ACTION).

Founded in 2017, ACTION is a model for integrating care delivery, research discovery and quality improvement. Led by experts in our Heart Institute, it brings together clinicians, researchers, patients and families from across the country and around the world to improve critical outcomes for children with heart failure.

“Cincinnati Children’s is building powerful collaborative learning networks to effectively improve child health and transform the delivery of care,” says Erin Hoffmann, the foundation’s co-founder and president. Through this partnership, we’re working together to foster change and positively impact the lives of children—and the families who love them.

“We hope our investment enables the medical center to advance research and care for kids dealing with heart disease and facing heart transplants,” Erin says. “This work reaches far beyond Cincinnati—it’s impacting kids nationally and internationally.”

A Heart for Hope

On January 22, Stephanie got the call—Hope was getting a new heart. Her family was amazed to see that two days after a successful transplant, their fearless Hope was up and walking.

“Through the ups and downs, Hope’s been the strongest of all of us,” her dad says proudly.

Because of her experience, she’s doing what she can to become an advocate for organ donation. “If you can be an organ donor, do it! You could be saving somebody’s life, like mine,” Hope says, her eyes bright with gratitude.

Stephanie’s advice to other parents is that if something is off, even if it seems small, it’s worth a trip to the doctor.

“If I hadn’t listened to her, it could’ve been so much worse. She could’ve also needed kidneys. It could’ve affected her lungs,” Stephanie says quietly. “We could have lost her.”

Today, Hope is glad to be home. Though she will be on five different medications to prevent organ rejection for the rest of her life, she won’t let that slow her down. She has goals to go back to softball and continue learning volleyball. And she’s happy to be looking to her future with hope and gratitude.

For more information or to make a gift, please contact Lauren Bosse at lauren.bosse@cchmc.org or 513-803-0639.