“You need open-heart surgery.” With those five words, Scott Boccia’s world turned upside down.
Scott had always been healthy and active. “I was the kid that played every sport possible. I went on to play, and later coach, college football,” he says. In his 40s, he was a busy dad to three young kids and an involved youth sports coach. Life was good — until he started noticing that he’d become exhausted and dizzy after an elliptical workout or a short sprint.
After his doctor detected a heart murmur, Scott saw a cardiologist who diagnosed him with a bicuspid aortic valve. The condition is a type of congenital heart disease — a structural defect that had been present since birth. Unbeknownst to Scott, this abnormal valve had been hiding in his chest for four decades. And it nearly cost him his life.
After two open-heart surgeries — most recently at the talented hands of Lucas Collazo, MD, Medical Director of Pediatric and Congenital Cardiac Surgery and Surgical Director of the Adult Congenital Heart Program at the Inova Heart and Vascular Institute — Scott is thriving. “I owe my life to the skills of my surgeon Dr. Collazo, his surgical team, the nurses and all of the support staff at Inova Fairfax Hospital,” Scott says.
What is a Bicuspid Aortic Valve?
In the weeks after his diagnosis, Scott became an expert on bicuspid aortic valve. He learned that the aorta is a major blood vessel that delivers oxygen-rich blood from the heart to the body. The aortic valve contains little flaps, or leaflets, that keep blood from leaking back into the heart. In people born with a bicuspid aortic valve, the valve has only two leaflets instead of the usual three. Blood can back up, causing the aorta to become stiff over time. As it progresses, it can lead to heart failure.
“Bicuspid aortic valve is one of the most common types of congenital heart defect,” says Dr. Collazo. But it’s unpredictable: “It can present itself early in childhood or show up when you’re 75.”
In Scott’s case, the defect remained hidden until he was 42. In early 2012, he had surgery at a non-Inova hospital to replace the damaged valve with a valve made of cow tissue. The surgery went smoothly, and within two months, he was recovered and feeling well. “I wish the story ended there,” he says.
It wasn’t that simple.
“I was plugged back into my active lifestyle, but five years later I realized something wasn’t right,” he says. He began feeling tired and short of breath. He scheduled some tests with his cardiologist. “By the time I got home from that appointment, I had two voicemail messages from my cardiologist,” he says. His valve was failing, and he needed surgery to replace it as soon as possible. “After hours of research, I selected Dr. Collazo, who is an expert in the field of children’s and adult congenital heart disease procedures,” he says. It was a decision that may have saved his life.
Repairing a Congenital Heart Defect
The surgery, Dr. Collazo says, was complex. Scott had a lot of scar tissue from his previous operation. What’s more, the tissue valve he’d received was small for a person his size. That may have contributed to it deteriorating almost completely in just five years. The damage to the valve had put significant stress on his heart, which was enlarged and struggling to supply blood to the body. “He was in heart failure,” Dr. Collazo says.
He replaced the damaged tissue with a new-generation mechanical valve designed to last a lifetime. The replacement went smoothly, but the stress of surgery combined with heart failure led fluid to build up in Scott’s lungs. He was placed on a life support machine that provides extracorporeal membrane oxygenation (ECMO). The machine replaced the function of the heart and lungs until his organs could recover. Five days passed before he was able to be removed from the machine.
His recovery was challenging. “I spent the next 36 days in a hospital bed. I had to relearn how to walk, write and speak,” he says. He graduated to a rehabilitation center, where he received occupational and physical therapy. A month and a half after his surgery, Scott finally returned home. “Now, more than three years later, I have worked extremely hard to get back in physical shape and I remain very active,” he says.
Congenital Heart Disease Treatment at Inova
Scott’s case highlights the importance of taking a personalized approach to the treatment of congenital heart failure. “It’s not one-size-fits-all,” Dr. Collazo says. “It’s our job to help patients understand their options and make educated decisions.”
Weighing those options together, Dr. Collazo and Scott decided that a mechanical valve was the best way forward. Unlike a natural tissue valve, the mechanical valve requires Scott to take blood thinners to prevent future complications. But the tradeoff of those medications is that his new valve is likely to last his lifetime. “It should be his forever valve,” Dr. Collazo says.
Today, Scott is healthy and active, and says he remains ever grateful that he chose Inova for his second surgery. The Inova Heart and Vascular Institute is a leader in the treatment of congenital heart disease in both children and adults. “We provide cardiac care over the course of a patient’s lifetime, from babies diagnosed with congenital heart disease before birth through childhood and throughout their adult lives,” Dr. Collazo says. “One of the great things about Inova is that we can provide that spectrum of care over the course of a patient’s lifetime, all under one roof.”
Teamwork and good communication are also key to Inova’s success as a leading heart center. Heart surgery like Scott’s requires a coordinated team of surgeons and anesthetists, nurses and ECMO staff, a post-op recovery team and many others who collaborate on a patient’s care. “From soup to nuts, we work together to provide the best outcomes for our patients,” Dr. Collazo says.
Today, Scott still communicates with his care team. “They just didn’t discharge me and move on. I’ve been proactive in reaching out during my annual surgery anniversary (07/20/2017) and I hear back from many of the team each time, including Dr. Collazo! My goal is to let the entire care team (surgeons, physician assisants, ICU nurses, Step Down Unit nurses, specialists and other team members) know that they are making a difference in what they do, but may not always hear about the subsequent progress and success of their patient’s recovery.”
Thanks to that expertise and experience, patients like Boccia have a second chance at life. “Scott is still here and he’s doing great,” Dr. Collazo says. “That doesn’t happen unless all the pieces are in place and working together.”
Learn more about Congenital Heart Disease Treatment at the Inova Heart and Vascular Institute.