Four Surgeries. One Strong Heart: Amy’s Journey with Congenital Heart Disease

Amy Guarino has lived with heart disease for as long as she can remember. Born with congenital heart defects, she learned early on how to listen to her body and recognize when something didn’t feel right.

Her experience with health care also shaped her career. Amy became a nurse, inspired by the care she received throughout her childhood and into adulthood.  

“Because of my congenital heart disease and my lifelong need for medical care to survive, I wanted to be able to professionally help others,” Amy says. “I had so many nurses help me in countless ways from childhood to present day, and if I can make an impact on someone’s life like those nurses did mine, then everything I’ve been through since birth is worth it. I love being a nurse.”

Over the years, Amy learned to trust the signals her body gave her.

That awareness, developed over decades of living with congenital heart disease, proved critical in 2025, when subtle shortness of breath signaled a serious change in her heart and led to her fourth open-heart surgery.  

Now 45 and living in East Alton, Illinois, Amy is back doing what matters to her most, spending time with her four grandchildren, thanks to expert care at BJC HealthCare.

A heart condition diagnosed at birth

Amy was born with aortic stenosis caused by a bicuspid aortic valve, a condition in which the aortic valve has only two leaflets instead of three, restricting blood flow from the heart to the body. She also was diagnosed with mitral valve prolapse, another congenital condition that affects how blood moves through the heart.  

“Growing up, heart disease was part of my life,” Amy says. “I always knew I’d need ongoing care.”

Congenital heart disease often requires lifelong monitoring. Even when patients feel good, the heart can change over time, and valves or surrounding structures can weaken or fail—making expert follow-up care essential.

Amy’s first two open-heart surgeries took place at ages 9 and 11 at St. Louis Children’s Hospital. As Amy grew, her heart changed, and surgeons repaired her aortic valve during one operation and her mitral valve during the other.  

At 21, Amy underwent her third open-heart surgery at Missouri Baptist Medical Center. During that procedure, surgeons replaced her aortic valve with a mechanical valve and implanted a pacemaker to help regulate her heart rhythm.  

In the years that followed, Amy felt great. She kept up with regular visits with cardiologist Lalithkumar Chouhan, MD, of St. Louis Cardiology Consultants, at Alton Memorial Hospital and lived an active life.  

When familiar symptoms return

Last summer, Amy noticed she was becoming short of breath, something she recognized as a warning sign. She went to her local Emergency Department, where she was diagnosed with acute decompensated heart failure, a sudden worsening of heart function.  

She was transferred to Christian Hospital for further evaluation and they performed extensive testing and discovered that Amy had developed severe bicuspid regurgitation, meaning that the valve was no longer closing properly and blood was flowing backward in her heart.  

Given the complexity of her condition and her surgical history, the team referred Amy to cardiothoracic surgeon Joshua Baker, MD, at Missouri Baptist for advanced cardiac surgery.  

Amy’s fourth open-heart surgery

In Amy’s case, Dr. Baker determined several areas of her heart needed attention and developed a carefully planned procedure. During the operation he performed the following:

• Aortic valve re-replacement: The mechanical valve Amy received 24 years earlier had worn out and needed to be replaced to restore healthy blood flow and reduce strain on her heart.  
• Tricuspid valve repair: The tricuspid valve, which controls blood flow on the right side of the heart, was leaking severely. Repairing it helped relieve her heart failure symptoms and improve overall heart function.
• Aortic root enlargement: The aortic root, the section of the aorta closest to the heart, was enlarged to ensure the new valve fit properly and allowed blood to flow smoothly.  
• Aortic arch replacement: The aortic arch, a critical portion of the body’s main artery, was replaced to strengthen weakened tissue and help prevent further complications.  

Together, these procedures addressed immediate concerns while supporting Amy’s long-term heart health, giving her heart the support it needs for years to come. 

Recovery close to home

Amy spent six days in the hospital recovering from surgery before beginning 12 weeks of cardiac rehabilitation at Christian Hospital, allowing her to continue her recovery close to home while staying connected with her care team. Cardiac rehabilitation is a medically supervised program designed to help patients safely recover after heart surgery through monitored exercise, education, and support. Rehab helped her rebuild strength, improve endurance, and regain confidence.  

Throughout her recovery, Amy has continued regular follow-ups with BJC Medical Group cardiologist Daniel Fox, MD, at Missouri Baptist ensuring close monitoring and continuity of care.  

“The care I received at each facility was incredible,” Amy says. “From the physicians to the nurses and rehab staff, I felt supported and knew I was in good hands.”

Today, Amy is feeling good and grateful for the expert care that has carried her through every stage of life. Most importantly, she’s back to enjoying time with her two children and four grandchildren, something she never takes for granted.  

“I’ve been through a lot with my heart,” Amy says. “But I am thankful for the care I received and the life I get to live now.”  

Amy’s story is a reminder that for patients with congenital heart disease, expert, coordinated care isn’t just important; it’s lifelong.  

Across BJC HealthCare, her emergency treatment, surgeries, and rehabilitation were connected by shared records and one collaborative team, all focused on helping Amy to keep moving forward with her health journey.  

And today, Amy is living fully—one strong heartbeat at a time.  

If you’d like to learn more about how we can support your heart care journey, visit the BJC HealthCare heart and vascular page.