Tony Ferrante, age 24, was born with complex congenital heart disease (CHD). His condition is called pulmonary atresia with intact ventricular septum and it’s a condition he has and will live with for the rest of his life.
According to one of Tony’s adult congenital heart disease (ACHD) cardiologists, Dr. Ashish Saini, CHD is the most common type of birth defect, affecting 1 in 100 babies.
“Seventy percent of patients with CHD are now adults,” said Dr. Saini. “That speaks to the success and advancement of medical care.”
As a baby and young child, Tony underwent two open-heart surgeries and two heart catheterizations.
Since birth, Tony has been annually monitored by cardiologists Dr. Saini and Dr. John Lane, clinical director of The Heart Center and the Adult Congenital Heart Service.
“Tony has done everything we have asked of him since transitioning to the adult program,” said Dr. Lane. “Often we lose patients to follow up once they grow up.”
Deena Barber, nurse program coordinator, Adult Congenital Heart Service, said one of the goals of the center is to educate and empower patients to take care of themselves.
“We see patients age 18 and older with CHD,” she said. “We emphasize it’s a chronic disease, and they will need lifelong care.”
That became apparent to Tony when he started experiencing shortness of breath and fatigue a few years ago.
“We did a stress test and noticed his exercise capacity had decreased since his prior stress test,” said Dr. Saini. “That’s what triggered the conversation that he likely needed a new heart valve.”
Tony was referred to pediatric interventional cardiologists Dr. Ari Gartenberg and Dr. David Waight to discuss a new procedure called transcatheter pulmonary valve replacement (TCPVR).
“Our multidisciplinary team believed Tony’s symptoms were likely the result of the strain being placed on the right pumping chamber of his heart in the absence of a functional pulmonary valve,” said Dr. Gartenberg.
While not a cure for his underlying structural heart disease, Dr. Gartenberg felt placing a new valve to restore normal flow through the right outflow portion of his heart would lead to an improvement in his symptoms.
Tony underwent an extensive screening process, including a CT scan that helped generate a “fit analysis” – a proprietary report created by Medtronic, the company that manufactures the valve.
“This allowed us to model Tony’s anatomy from multiple perspectives to assist with selecting the optimal device for Tony’s heart. Additionally, it helped us choose the best location for device placement,” said Dr. Gartenberg.
On February 12, 2024, Tony became the first patient at Akron Children’s to undergo the TCPVR procedure.
“We used the blood vessels in his upper leg to gain access to the heart chambers,” said Dr. Gartenberg. “We next used a specialized sheath into which the new heart valve (Harmony transcatheter pulmonary valve) was completely collapsed and used it to position the heart valve in the proper location.
“With removal of the sheath, the Harmony valve was deployed by expanding to conform to Tony’s native anatomy,” he added.
This minimally invasive approach avoided the need for what would otherwise have necessitated open heart surgery.
“No artificial tissue valve lasts a lifetime, so the valve will eventually need to be replaced,” said Dr. Gartenberg. “One of the valve’s advantages is it’s designed so we can replace it by deploying a new valve housing within the previously placed stent frame (a “valve-in-valve” procedure).”
Following the procedure, Tony was up and walking. He was discharged the next day and returned to work shortly after.
“Tony has no restrictions; he can do as much activity and exercise as he wants,” said Deena. “We emphasize the importance of a healthy lifestyle for all our CHD patients, which includes regular exercise, good dental hygiene and avoiding smoking/vaping.”
“CHD is a lifelong condition, and Tony’s story exemplifies the importance of consistent care so we can address issues as they arise,” said Dr. Saini. “Before 2015, we would have had to do open heart surgery on Tony. By embracing groundbreaking procedures, like TCPVR, we empower our patients to live longer, healthier lives.”
Learn more information on Akron Children’s Heart Center.