13-year-old Renna Linn among the first patients to receive FDA-approved valve to maintain congenital heart defect while still allowing her to cheer

Child Health, News | 3 months ago

New Valve Technology Allows Pediatric Patients with Congenital Heart Defects to Return to Life Quicker and Stronger than Ever

Children born with a common heart defect called tetralogy of Fallot will face long-term challenges from their condition. That’s why it’s important to safeguard their heart health as they age. Learn how Atrium Health Levine Children’s became the first hospital in the state to offer an innovative valve technology to adolescents and adults with this congenital heart defect.

Atrium Health Levine Children’s Hospital is the first site in North Carolina and one of the first two hospitals in the Southeast region to offer the Medtronic Harmony™ transcatheter pulmonary valve (TPV), an FDA-approved treatment for pediatric and adult patients with tetralogy of Fallot (TOF).

TOF is a common type of congenital heart disease, accounting for about 10% of all heart defects that occur before birth. This condition causes a hole to develop between the lower chambers of the heart, and limitation of blood flow to the lungs. Most of these patients will eventually need a valve replacement and, until recently, about 80% of individuals with this condition did not have a valve replacement option other than open-heart surgery.

The new valve gives many of these remaining patients with TOF a non-surgical valve replacement, limiting the number of future surgeries. Joseph Paolillo, MD, interventional cardiologist and chief of pediatric cardiology at Atrium Health Levine Children's, and Matthew Schwartz, MD, medical director of the pediatric and adult congenital cardiac catheterization laboratory at Atrium Health Levine Children‘s Hospital, implant the valve through the patient’s vein in the leg or neck.

“Our track record with TPVs has been strong enough that we were selected to be one of the first hospitals in the country to use this newly approved technology for patients with primarily a leaky pulmonary valve,” Dr. Paolillo said. “We are thrilled to be part of the rollout of this new device and expect it to be a game changer in our field for both low- and high-risk patients. We have performed 10 of these valve procedures so far.”

As part of their initial complete repair, patients with TOF have the hole in the heart and the narrowing of blood flow to the lungs repaired. Over time, depending on the type of repair, they develop an obstruction again, or leaking of blood flow from the lungs back into the heart. There have been non-surgical options to help some of these patients for over 20 years. However, this new technology provides a treatment option for many of those remaining patients needing a pulmonary valve replacement.  

“As children age and transition to adulthood, the right side of the heart can grow extremely large and this affects heart function,” explained Dr. Paolillo. “We know that patients will benefit from having a valve replacement to reverse some of the damage to the right side of the heart, and to safeguard their heart health.”

Many of the patients screened qualify for the newly FDA-approved valve. Due to the size of the catheter, patients are typically at least 11 years old to have the procedure. After the valve is implanted, patients stay in the hospital overnight and return home the next day, which is a huge advancement considering the alternative would be an open-heart operation that requires a much longer recovery period. Patients have their first follow-up visit two to four weeks after the procedure. Then, they are checked every six to 12 months, depending on their health status.

A quick return to a VERY active life: Renna’s story
13-year-old Renna Linn is a bright eighth-grader who loves sports and calls herself an “extreme athlete” – staying active nearly 10 hours per week including team cheer practices, tumbling, recreational conditioning and private lessons. However, different from most athletes, Renna has lived her entire life with a heart condition. She was born with TOF and had open heart surgery at three months old.

Fast forward 12 years later and Renna developed worsening regurgitation through her pulmonary valve, which meant she had symptoms like shortness of breath, dizziness, and feeling lightheaded. “I was seeing stars all the time,” Renna says. She struggled to catch her breath – certainly not ideal for someone as athletic as Renna.

Renna and her parents, Joel and Stephanie, knew that Renna would eventually need another procedure to repair her heart valve. So, when the Harmony™ transcatheter pulmonary valve became available and Dr. Paolillo told Renna’s family that  she would be a good candidate for this cutting-edge technology, they knew it was their best chance at keeping Renna as healthy and active as possible.

“A lot of people don't really understand that cheer is a very challenging sport with some very technical tumbling,” says her dad, Joel. “And we knew this procedure would have a shorter recovery time – six days versus six weeks, making it the right decision for us.”

Although Renna was scared of having surgery, she was more scared of what might happen if she didn’t have it, so in October 2021, Renna had her valve replacement in the cardiac cath lab. Within weeks she was back doing all the activities she loves, including her impressive tumbling.

 

“I feel amazing!” she says. “One hundred times better than I did before. I’m so grateful for the entire Levine Children’s team and how they supported me through all of this. I'm also thankful for my mom and dad because they put a lot of love and effort into helping me get through this. They’re literally the best parents ever.”

So, what’s next for Renna? She hopes to be a world's team athlete and to try out for the USA Olympic Cheer team. When she grows up, she wants to be an OB/GYN who lives in Hawaii and surfs.

If there are other young people considering the procedure, Renna encourages them, “I know it might be scary, but you should definitely go ahead and get it done because you don't want to live your life in fear. You don't want to live to a minimal capacity – you want to be maximum.”

Learn more about Levine Children’s innovative pediatric heart surgery and cardiology program.