Leo's Story:

On December 25th, 2011, Marie Boivin and Greg Banning received the best gift of all. Their baby Leo was born weighing in at eight pounds, nine ounces. But before being released from hospital a doctor was concerned with Leo’s rapid breathing and heard a heart murmur. An x-ray revealed Leo had an enlarged heart. While many babies are born with murmurs that naturally correct themselves, Leo was sent to CHEO for a heart ultrasound as a precaution because the doctor had difficulty finding a femoral pulse. Leo looked so incredibly healthy many people felt the doctor was being overly cautious. “I can’t even bring myself to think what would have happened if we had been sent home,” says Marie. “We will be forever grateful to him.”

The news was tragic. Dr. Lai explained that Leo had multiple problems with his heart: coarctation (narrowing) of the aorta, hypoplastic aortic arch, atrium septal defect and bicuspid valve. “It was like the air was let out of me,” says Greg. Little Leo was admitted to the neonatal intensive care unit (NICU) that very day with a life-threatening condition.

“To see our little baby in the NICU with an IV in his head and having to be fed intravenously was heartbreaking,” remembers Marie. “I couldn’t even nurse my little boy. Sitting there watching the monitors was very difficult but the nurses were so supportive. When you had a little breakdown, they were there to reassure you; that is invaluable.”

At 11 days old, Leo underwent open heart surgery. In the days prior to his surgery, the surgeons explained everything that would happen and explained the risks to his parents. As the staff took Leo to the operating room dad wondered if this would be the last time he would see his son. During the seven hour surgery, nurse Tara regularly updated Marie and Greg. At the end of the operation Dr. Maharajh and Dr. Shanmugam told them the surgery was a success. “That’s all you are waiting to hear,” says Greg. “Until that moment you just don’t realize the stress you’ve been holding in. When we heard Leo was stable, we just broke down.”

It was traumatic for Marie and Greg to see Leo after his surgery. Their little boy was hooked up to so many tubes, wires, pieces of equipment, he was swollen and even his skin colour looked different. “Thankfully we were given a tour of the intensive care unit beforehand and shown photos so we knew what to expect,” says Greg. “Even with that, seeing your own baby boy in that state was difficult, surreal even.”

What felt very real was the tremendous support shown to them by everyone at CHEO. “The doctors and nursing staff are simply amazing,” says Marie. “When you witness first-hand the skill these people have, the amount of work that goes into caring for one child, it’s just unbelievable.”

As caregivers lowered Leo’s sedation there was concern when he was crying with no sound. For Marie, knowing that Leo survived surgery was paramount but she was concerned about his vocal cords. Sadly, the nerve which controls the left vocal cord must have been damaged during surgery. A scope confirmed that Leo’s left vocal cord was paralyzed. This was a known possible complication from surgery.

As each day passed Leo continued to recover from his major operation. His parents celebrated little goals as medication was reduced, tubes were removed, and their little boy was emerging through all the equipment. Because the vocal cords protect the airway when swallowing Leo needed a naso-gastric tube for nutrition. Unfortunately, he would still not be bottle fed. After 10 days in the PICU, Leo was finally transferred to a regular unit in the hospital. For the first time since his birth both Marie and Greg were given the go-ahead to be able to sleep at home. Nurses would call if there was an emergency.

“At 1 a.m. the phone rang,” remembers Marie. “A resident informed us that Leo had vomited blood and that he has been moved back to the intensive care unit. We flew to CHEO.” As they walked down the hallway all they could see were multiple doctors on top of Leo and the urgency on everyone’s face. “There was so much action to stabilize him and then find out why he was vomiting blood. He lost so much blood he needed transfusions,” says Greg. “I was just so worried that a stitch in his heart had broken. I was told that if that happened it would be catastrophic.” Turns out that Leo had a stomach ulcer that bled but was thankfully treatable.

One month after his admission, Leo was able to go home. At this point he was still using a tube to feed so Marie and Greg had many lessons in how to feed their baby. But just another month later mom heard Leo cry out as any other child would, which was music to her ears. She alerted CHEO of this and a feeding study confirmed that liquid was no longer going into Leo’s lungs. His right vocal cord was fully compensating for the left, which was still paralysed, meaning he could finally eat by mouth. A true milestone for this little fighter.

“Words truly cannot express how grateful we are for everyone at CHEO who took such good care of Leo and of us as well,” says Marie. Leo may have had a traumatic start to his life but thanks to the caring people at CHEO he is now a healthy and active little boy. At age two he is energetic, happy, loves dinosaurs, makes everyone around him laugh, and according to his parents, rules the house!

Just this past month Leo noticed the scars on his chest for the first time and said, “Bo, Bo.” Leo has no recollection of all he has been through medically, and for that his parents are truly grateful. They are also grateful to the CHEO staff and for the support they received from so many friends and family. Leo may wheeze a little when he runs and may be limited in the sports he can choose but given what the outcome could have been, his parents are okay with that. “When you see the other children at CHEO, you get perspective every day,” says Greg while Marie nods approvingly. “We know we are blessed.”

"Thank you to CHEO and Katrina Bussey for allowing us to re-publish Leo's story."