Winston and family.By Dee de los Santos

Our heart journey began with our 22-week ultrasound, which had to be redone several times—Winston was always in the wrong position, and they couldn’t get a clear reading of his heart. At BC Women’s Hospital, they were finally able to see the entirety of his heart, and what was missing. Even recalling that day five years later is still difficult. My entire life changed when I became a heart parent.

The day was a grim whirlwind of events: drawings of his heart’s anatomy, explanations of what needed to be done, and explanations of what could be done. What stuck was that he had complex heart issues and there was only uncertainty ahead. Winston was diagnosed on that day with double outlet right ventricle (DORV), transposition of the great arteries (TGA), and a straddling mitral valve. With DORV, the pulmonary artery and the aorta both connect to the right ventricle—when typically the aorta connects to the left. With TGA, the pulmonary artery and the aorta are switched.

After a group discussion between the cardiologists and the cardiothoracic surgeon at BC Children’s Hospital, they decided the best course of action was a series of three surgeries collectively called the Fontan procedure. The first of these procedures (Norwood) would be done in the first days after birth, the next (Glenn) at one year old, and the last (Fontan) at five years old.

When Winston was born, we spent a week in the hospital, and the cardiology team was confident that Winston’s heart was performing well enough that the Norwood procedure was not needed. We could take our baby home, but they would keep a close eye on him.

Several weeks before Winston turned three months old, our cardiac team told us that we would have to bring him in for his first procedure: a pulmonary artery band and an atrial septectomy (a hole created between his atria to improve blood flow), as his oxygen levels were dipping below optimal, and he was not ready for and was far too young to have his Glenn procedure.

No matter how many times you go for a procedure or surgery, it is never easy. As a parent, you are trying your best to maintain your composure so that you don’t upset your child. But those moments leading up to the hand-off are the most difficult. Our first surgery and the emotions surrounding it have stuck with me, and I feel that those feelings will never go away but will hopefully dull with time. I distinctly remember a very kind cardiac operating room nurse taking Winston (who was all swaddled up, sleeping, and less than three months old), looking me in the eye, and saying with a smile, “We’ll take good care of him.” The nurse and Winston went behind the automatic doors, and in that very moment, her words were comforting but also terrifying. The terror came from the real possibility that I would never see Winston again.

We were told that the procedure would take five hours, but Winston’s cardiothoracic surgeon, Dr. Gandhi, was done in three. I felt so much fear as we sat in the waiting area, waiting for him to appear. Thankfully, Dr. Gandhi had good news: Winston did well, he was being transferred to the intensive care unit (ICU), and we would see him shortly.

We were led into the cardiac ICU to our little son, who was hooked up to many machines—mostly for monitoring but also for medication. The first 24 hours are always the most unpredictable, so they have one nurse for every patient. Winston did well, and we were sent to the step-down unit. After five days as an inpatient, we were back home in time to celebrate his 100-day ceremony—an Asian tradition of celebrating the first 100 days of a child’s life.

The Glenn procedure was planned for May of the following year, prior to Winston’s first birthday. I remember between surgeries fortifying all his food and drinks so he could gain the optimal amount of weight to be a good candidate for the Glenn. That time felt like it went so quickly, as we had to buckle down and prepare him yet again for surgery.

Winston ended up catching a cold, so Dr. Gandhi pushed our surgery further out, because he wanted Winston in optimal form for the Glenn. Winston ended up having his Glenn in July of 2019, and we stayed in the hospital for a grand total of three days: one overnight in the ICU, and then home after two days in step-down. We were shocked to say the least, and we even asked if we could stay longer. But there is no better place to heal than home, so home we went.

We got to enjoy the next couple years between the Glenn and the Fontan, but of course with exceptions—the largest and most apparent one being the pandemic. Our plans of returning to play dates and outings were abruptly cut short. We kept Winston indoors because we were unsure of how it would affect him, and because we had to keep him well for the Fontan. We struggled with that uncertainty, as we knew it meant we were hindering his social and developmental skills. After a lot of thought and discussions with his team, we decided to enroll him in a small preschool. Winston enjoys his time at school, and he often surprises us with all the things he’s capable of. It is such a joy—a joy we never thought we would be able to experience.

At our six-month checkup, our cardiac team told us to prepare for Winston’s Fontan. The bubble of living some sort of normalcy popped, and going through the motions leading up to surgery was now front and centre. We dreaded this surgery, mostly because we knew Winston would definitely remember this time around, and we had no idea how to have the conversation with him that he would have to go back to the hospital and have a surgery.

The procedure itself wasn’t complicated; it was the healing process that took a toll on Winston emotionally. Winston is generally a happy and energetic child, but to see him drained of that and unwilling to play or engage with the wonderful certified child life specialists at BC Children’s Hospital was incredibly tough. We wondered if the trauma from being in the hospital would linger for a long, long time. But of course, Winston being Winston, once the drainage tubes were pulled out, he was back to his sweet, funny self.

Winston in the hospital.

We are now coming up to Winston’s fifth birthday, a milestone we weren’t sure we’d see. Watching Winston fight, struggle, and thrive through these years has been a privilege. Winston takes tae kwon do, loves to get around on his scooter, and loves participating in sports. He eats like a full-grown adult. His favourite foods are Grandpa’s spaghetti and any form of bread. He’s taught himself the planets in our solar system and internal anatomy, and he reads above his age level. We are constantly amazed at what he can accomplish.

Before Winston was born, one of our nurses told us that we should imagine the journey not like a race, but like a marathon. Don’t dwell on how you’ll get to the end point, but take it mile by mile. I often think back to that advice. Having a heart child means life is full of uncertainties, but in those moments, we love harder and deeper because we know how precious time is and how easily that time can be taken away. What warms my heart is having met so many heart families through the Children’s Heart Network and knowing that there are people out there that “get it,” because this journey can often be lonely. We love participating in breakfast with Santa and connecting with other families, and hopefully some day soon Winston will connect with other kids just like him to go to summer camp and the other activities the Children’s Heart Network provides. ♥

On the left, Winston in a hospital gown. On the right, Winston in a Tae Kwon Do uniform.

“Winston’s Heart Journey” is from our summer 2023 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.