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Heart Journeys

Roman


In January, 2007, my husband and I were delighted to find out we were expecting our first child.

However, our excitement quickly turned to despair when, at our 18 week routine ultrasound, our technician had difficulty seeing all four chambers of our baby’s heart. She left the room and returned soon after with two senior technicians. As they took turns looking at our baby’s heart, our worst fears were confirmed; our baby would be born with a series of complex congenital heart defects. The months leading up to the birth were filled with appointments, multiple echo cardiograms, and a birth plan that would require traveling to Edmonton to deliver the baby.

The prenatal diagnosis was pretty grim and included Double Outlet Right Ventricle, Pulmonary Stenosis, and Dextrocardia. We were given the following options; compassionate care, which means no intervention, allowing nature to take its course, a heart transplant, or a series of three palliative surgeries which would reroute his circulation to alleviate the burden on the one pumping chamber. We chose the surgical route, and when our baby boy was born that fall, he was immediately transferred to the Stollery Children’s Hospital in Edmonton for surgical assessment. Perhaps our greatest disappointment the day of his birth was that we were not permitted to hold our son before he was whisked away by the transport team.

When I was finally able to see him for the first time, he was already intubated and was hooked up to numerous wires and machines. Over the course of the next few days, it was determined that he would skip the first surgery (called the Norwood) thanks to another heart defect he had called pulmonary stenosis, which in his case, was actually helping to prevent his heart from becoming overloaded. For the first time, we began to feel optimistic and after a month of hospitalization, we were finally able to take our son home – albeit with a nasogastric tube (NG tube) and oxygen. My husband and I took a crash course on inserting and removing the tube, a nerve-wracking job when our test subject was our four week old son!

When Roman was just three months old, we returned to Edmonton where he received the first of his staged surgeries, the Glenn. He came through the surgery with no complications and we were home in a week! From that point on, Roman began to thrive, grow and reach all of his milestones.

Just as he was turning 3, his sats began to decrease and it became evident that his need for the last of the palliative surgeries (the Fontan) was approaching. We were sent up to Edmonton for a heart cath to make sure the pressures in his heart could sustain the Fontan. During the cath, they ended up coiling off several collateral veins that had formed due to his decreased sats. Soon after, he successfully underwent the Fontan. Again, he spent just one week in the hospital.
Roman’s surgeries were performed by Dr. Ross, a tremendously talented cardiac surgeon to whom we will be forever grateful. He is seen yearly by the equally talented Dr. Dicke, the pediatric cardiologist who has been following him since he was an infant. We know we are in good hands with both the Edmonton and Calgary team. While these surgeries are palliative and not a “repair”, we hope they will tide him over to adulthood when other treatments, perhaps through stem cells or other medical advances, will be available and allow him to live a normal lifespan.

Today, our son is doing all of the things that other kids his age do; he goes to school, rides his bike, skis and plays soccer and t-ball. He is happy and carefree, and doesn’t remember a thing about his surgeries other than the play room! While we don’t know what heart problems await him in the future, we focus on living day to day and celebrate the positives in our life.

~ Jen Beleshko


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