Three cardiac surgeries in three years

On July 11, 2013, our 4th child was born. A wonderful birth of a baby that seemed perfect at first sight, but a few minutes after her birth, we knew Clara wasn’t doing well. Our hospital wasn’t able to diagnose her health problem, so she was quickly transferred to the Montreal Children’s Hospital.

Our baby left by ambulance with staff members from the Children’s. She was so small in her incubator, intubated and so fragile! Pediatric cardiologist, Dr. Tiscar Cavalle-Garrido took our little princess into her care upon her arrival in Montreal. After the two-and-a-half-hour drive that separated us from the hospital, we learned about her diagnosis: our baby was born with only one heart ventricle, a very serious congenital heart defect.

Just 48 hours after birth, Clara had to undergo open-heart surgery to ensure adequate circulation of blood to her lungs and body. Her surgeon, Dr. Christo Tchervenkov, placed a small Goretex tube called a shunt between her aorta and her pulmonary artery. Clara remained in hospital for 32 days because of a leakage in her chest that made her recovery more difficult than expected. When we left the hospital, we could finally enjoy our baby and give her a normal life, knowing that she was not a normal child. Joy, happiness, delight were part of our lives during the months that followed but were also accompanied by tears, disbelief and worry.

At 10 months old, Clara’s condition began to worsen. We rushed her back to the hospital, where she underwent her second open-heart surgery the next day. The procedure, called the "Glenn", involved disconnecting her superior vena cava (the large vein that brings deoxygenated blood from the upper part of the body to the right ventricle of the heart) to connect it directly to the pulmonary artery. The deoxygenated blood coming from the upper part of her body (head and arms) would therefore be directly brought to her lungs without having to pass through her heart via her superior vena cava.

Clara recovered very quickly and after only 8 days in hospital, she was back home with us. We have since enjoyed a respite from frequent hospitalizations, but this will soon be coming to an end. Clara is three and a half years old, and this week, we learned that it’s time to plan for her third operation. This third surgery, called a "Fontan" procedure, consists of bringing deoxygenated blood from the inferior vena cava from the lower part of the body directly to the pulmonary artery. At this point, all of the oxygen-poor blood from the body will be able to flow through her lungs.

As we wait for the date of this final operation, the anticipation has us reliving all the emotions we’ve experienced since our daughter was born. For the past three years, we’ve had the opportunity to meet some great people at the Montreal Children's Hospital. They took care of our baby, they supported us, listened and encouraged us, but most importantly, they turned our little baby into our miracle.

I’d like to thank all the members of the Cardiology team for being there for us during the most difficult times with our child. It’s with fear, worry and a lot of apprehension that I’m about to hand my daughter back over to you for her operation, but my great confidence in you helps me move forward. I’m proud to say that my daughter is treated at the Montreal Children’s Hospital.

Thank you and see you soon,

Clara Bergeron's parents