Nathan was placed on an ECMO machine to provide cardiac and respiratory support almost immediately after his birth and remained on it until October 18. Nathan was diagnosed with a very rare and critical heart condition called Supracardiac Total Anomalous Pulmonary Venous Return. This condition affects how the pulmonary veins return oxygen-rich blood from the lungs to the heart. He underwent his first open-heart surgery to treat this condition on October 26 and would undergo a second on December 5.

On November 2, 19 days after Nathan was born, Crystal and Justin were allowed to hold their child for the first time.“When we were waiting to hold Nathan, we were actually scared to. Not because we were afraid of doing something wrong or hurting him but because we knew we would fall completely in love with him. He was really sick, and we weren’t sure if he would ever make it home. The day we held him our nurse wasn’t having any of it. She said we’ve waited long enough and she’s putting him in our arms. Our fears came true, we fell hard and never looked back. We didn’t care what his future held. From that moment on we weren’t letting go.”

Nathan later developed a very progressive form of Pulmonary Vein Stenosis, a disease with no treatment or cure. This disease thickens the walls of the pulmonary veins and blocks them from bringing blood from the lungs back to the heart. The family’s only option was a double-lung transplant. On August 19, Nathan, who was 10 months old, was listed for a double-lung transplant.

Crystal and Justin remember these first ten months as being full of challenges. “Nathan’s first ten months were hard. He would cry all the time, he hardly slept. He would have meds, feeds and cares every two hours including the night. He is also our first baby, so we were dealing with being first-time parents at the same time. It was exhausting and there were times when I felt like I couldn’t get through the days. We were in constant fear of what was going to happen. We knew we were living on borrowed time, a lung transplant was not something we were thinking about until Nathan was 9 months old and we knew that even finding lungs for his size were very rare. Despite all this though, we loved him as hard as we could.”

Seven days later after being listed, at 7 pm, the family received the call that there was a set of lungs available, and Nathan would be undergoing a transplant. After a successful surgery, Nathan became the 7th infant in Canada to receive a double-lung transplant.

Despite a successful transplant, Nathan became very sick post-transplant. As Crystal remembers, “Transplants in general are difficult. Our journey was more difficult than anyone expected. We almost lost Nathan; he had many complications after his surgery. As parents we really struggled mentally, we still do. It’s not easy watching your child’s health decline. It took a toll on our relationships and family, but we couldn’t give up. We choose to “smile.” This was important to us as we didn’t want Nathan to see us struggle. We needed to lead by example. Once we accepted our journey, it was easier for us to move on. It was still hard, but we needed to stay strong for Nathan. We took it one day at a time and celebrated our wins and good days.”