Zac’s Story

Zachary, my grandson, is a unique and special person. I know everyone thinks their grandchildren are special, but Zac (as he likes to be called) truly is, for many reasons.

Zac and his twin sister Madison were the first grandchildren born to both families. Within days of Zac’s birth we were confronted with a devastating reality. Zac was born with a congenital heart defect called Truncus Arteriosus, a rare, heart problem that means there is only one large blood vessel leading out of the heart instead of the normal two. This usually comes with a hole between the two lower chambers of the heart, causing the oxygen-poor blood That’s heading to the lungs to get mixed with the oxygen-rich blood coming from them and heading to the rest of the body. This causes severe circulatory problems that, if left untreated, can be fatal.
(http://www.mayoclinic.org/diseases-conditions/truncus-arteriosus/basics/definition/con-20024974)

The difference between the two babies was striking. Madison was thriving while Zac struggled; even eating was hard for him. As I held Zac, trying to give him his bottle, his breathing was labored, and I could see his chest contracting under his ribs as he gasped for air. It was so disturbing that I mentioned it to his ICU nurse. We all tried in vain to encourage Zac to take his bottle, but he was just too tired and weak to suck. Ultimately, a feeding tube was inserted. As Zac continued to fade, we were told he needed lifesaving surgery as soon as possible. At thirteen days old Zac was scheduled for open-heart surgery. He would be kept alive by way of a heart-lung machine during the six-hour operation. My daughter and her husband were told he would not live longer than a few months without the surgery. It was a distressing reality as we were torn between happiness when we were with Madison and sadness when we were with Zac.

Zac’s ICU nurse suggested we have him baptized prior to the surgery. So mom and dad decided they would have the babies baptized together. Godparents were chosen and a priest was called in. It was heart-breaking to witness these two newborns lying together in the incubator. Two beautiful babies, dressed in nighties and frilly bonnets for their baptism. One expressing a loud, robust voice with arms and legs flailing, while the other lay still, pale and lifeless. Zac was on medication to keep him as still as possible and preserve his strength for the upcoming surgery.

Days later, the families gathered in a small room, waiting for the outcome of the long, painstaking surgery. Madison was with us and provided a much-needed distraction. But there was still an overwhelming sense of relief when we were finally told the surgery was a success. One month later, Zac was back home with his sister. Tears welled in my eyes as Zac lay in the crib beside his sister. His cry was that of a sick baby. He was so thin and weak and his head had been shaved on one side for the IV. It really was a heartbreaking site and I couldn’t prevent my tears from falling on his little blanket. The healing process was long and heart-rending, with everyone pitching in to help the parents. In the meantime, we all fell in love with these two little warriors.

Everything seemed to be going well until Zac was six months old. He began to struggle with his breathing again. During his appointment with the cardiologist it was discovered that his pulmonary arteries were not growing, and he was going to have to undergo another procedure. The surgeon assured us this would not be nearly as invasive as the initial procedure: he would go through the groin to insert the two stents needed to open up Zac’s pulmonary arteries. We steeled ourselves as best we could for the surgery. I took care of Madison, and the other grandparents travelled with mom and dad to the Toronto Sick Kids Hospital. Within a few days Zac was home and on the mend. He was a little cranky, but still a lovable boy. A baby swing proved to be a lifesaver, providing him distraction from his pain, and a needed break for those caring for him.

Zac got over this hurdle and began to thrive. His engaging personality was undeniable; he was a totally unselfish and loving boy who readily shared with his sister. Through the next few years Zac was closely monitored by a cardiologist, and, eventually, he began school with his sister. There were no obvious signs of the trauma Zac had experienced so far in his brief life, with the exception of the scar on his chest. At five years old he began to play hockey and loved it. One year he even made the competitive team. I had always been doubtful that Zac would be able to play hockey, fortunately, I was wrong. Although a good player, he lacked endurance on the ice. He often returned to the bench, sick to his stomach. But that didn’t prevent him from going right back out on the ice. It pulled at my heartstrings to see the little trouper he was as he skated with his friends trying so hard to keep up.

As the years passed he developed into a wonderful boy and teenager. Eventually he would need more surgery, but nobody knew when that would have to happen. Every check-up was filled with anxiety until his parents were able to reassure us that he was fine. But then the day arrived. Zac was almost fifteen and completing his first year of high school when the cardiologist told him that the time had come for his surgery. He bravely asked the cardiologist only one question: afterward, would he finally be able to keep up with the other kids? The cardiologist was tactful in telling Zac that he would feel much better and have more energy, but was careful not to make false promises. The brave front fell when Zac was alone with his mom. Then the tears came. But only briefly. Zac would face this surgery as he faced everything in his life, courageous and strong.

The surgery was to replace the donor valve that had been inserted when he was thirteen days old, plus his stents would be expanded to accommodate his growing body. We had always been told he would have to have open-heart surgery to change the valve, but, with medical advances, they were able to do both procedures through the groin. This would help to speed the recovery, and it was so fast that only a little over a week after surgery he was able to try out for the badminton team?and he made it! I felt my breath catch as I was overcome with pride, but I didn’t want to make too much of a fuss.

The surgery had given him increased blood flow that allowed his heart to function more efficiently, providing him with much needed energy and increased endurance. I suggested he try out for hockey again, but by now he was spending most of this free time working at a job he enjoyed and had lost interest in hockey. His sister, Madison, has since picked up the hockey torch and become an awesome goalie.
Zac is now sixteen years old and doing all the typical things teenagers do. He is good looking, popular, well liked, and seems to be able to take most things in stride. A memorable day occurred recently when Zac asked me if he could have twenty dollars to go to the movies with his friends. I had already planned to give him forty dollars, as I had bought his sister some clothes. But when I gave Zac the forty dollars, he handed me back a twenty-dollar bill and said “I don’t need this grandma.” Anyone who has teenagers will understand how truly remarkable this was. As I looked into his eyes I felt a tug at my own heart, because I knew there was nothing wrong with his, and he was a truly special human being. Zac will probably need more procedures throughout his life, but, with his attitude, I know he’s capable of handing those ups and downs. After all, he’s a survivor.

Barbara Godin is a graduate of AU and writes the “Dear Barb” column. She lives in London, Ontario with her husband, two dogs, and one cat.

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