VM Voices: The beat goes on – three years after heart surgery
Last week my oldest, three-and-a-half-year-old Declan, took a tumble at the bike park, landing right on his tummy. The fall wasn’t too hard, but he was stunned and got up with tears in his eyes, looking for Mama as he brushed the dirt off. I ran over and after a quick hug he was happy again, back riding the track. Declan is a pretty tough kid who recovers quickly, bouncing back into play but sometimes, especially when he lands on his front, I’m instantly thrown back in time to how sensitive that area once was.
Three years ago, he had a 10cm incision in his chest as he recovered from open heart surgery.
Devastating News
Most days I don’t think about the fact we spent much of the first six months of Declan’s life in the hospital. These days he’s an active, curious, creative kid who drives me crazy but makes me laugh to my core. He pushes limits, jumps off things he shouldn’t be climbing and often requests scrambled eggs and then refuses to eat them. Typical three-nager. But from time to time something will trigger the understanding that’s he’s not typical, he’s been through more than most his age. And as his parents, so have his Dad and I.
It was at week 22 of my pregnancy when we found out Declan would need open heart surgery to have a chance at a healthy life.
After our initial 20 week scan the doctors ordered another scan, and then another and then scheduled a day at Women’s Hospital, without giving us too much explanation. During a series of appointments, we were told our unborn baby had a congenital heart defect called TGA, transposition of the great arteries. This means the two main arteries that bring blood out of the heart – the main pulmonary artery and the aorta – are swapped causing blood not to circulate around the whole body. Declan also needed surgery to repair a ventricular septal defect (VSD) and an atrial septal defect (ASD.) My husband and I were speechless and devastated hearing this news.
The remainder of the pregnancy was tense. There were a lot of appointments and a lot of unanswered questions. We had incredible support from the cardiac team at BC Women’s Hospital but so much fear around our ability to cope with an uncertain future. I dealt with the grief of having not a normal, healthy baby by pushing down the fact I was pregnant, not buying baby things, not talking about the baby, not planning a baby shower. I could barely picture my life as a parent, let alone my life as the parent of a sick child. But our little baby continued growing inside me and made his debut December 2016, weighing in 9lbs 5oz. He was taken straight to the BC Children’s Hospital Pediatric Intensive Care Unit (PICU) and hooked up to the machines that would keep him alive.
For the next six months we were in and out of hospital on a regular basis. Declan was put on a feeding tube and required various medications throughout each day and night.
The feeding and medication schedule was grueling and reinserting the feeding tube was a regular trauma for all of us. As most new parents are, we were sleep deprived and trying to figure out life as a family of three. Honestly, I don’t remember much for those first few months. It was a never-ending cycle of feeding and medicine and doctors and hoping for weight gain at each appointment. Declan had to reach a certain size before they would attempt the surgery because his condition was more complicated than his original diagnosis.
Open Heart Surgery Day
In June 2017, Dr. Gandhi gave the thumbs up and we were ready for surgery. That Tuesday at 6.30 am, we dropped our baby off at Children’s Hospital. We were told to hope for the best but to understand there may be complications. The nurses gave us a pager and instructed us to be back in five hours.
My husband and I went for brunch, somewhere we’d wanted to go but there was always a line on weekends. We window shopped and hugged each other. We walked around Queen Elizabeth Park. We laughed a lot and talked nonsense, about unimportant things, something we’d almost forgotten how to do since becoming parents. The day was surreal.
Declan’s surgery was a success. Although, initially his temperature was too high and there was ice all over his little body in addition to the tubes and monitors and stickers. It was scary to see but the relief that it was over and that it had gone well, was powerful. We were cautiously optimistic and confident we were in good hands.
We spent a few days on 3M, the heart ward at Children’s Hospital. Shout out to the incredible staff of nurses and doctors who kept us informed and made us feel supported throughout the experience. Kudos also to the friends and family that dropped food off to the hospital, called us and checked in, and helped us feel strength of the village around us.
Recovery
Declan recovered from open heart surgery incredibly well; it was amazing to watch. After two weeks he was able to leave the feeding tube behind and grew stronger than he’d ever been. At six months old, prior to his surgery he was unable to sit, roll or do much that other babies his age were doing. By ten months he was caught up, crawling, and pulling himself to stand. His scar has healed very well and is only noticeable if you’re up close. Declan knows that he had surgery when he was a baby and understands that Dr Ghandhi ‘fixed his heart,’ but he’ll never remember the details and for that I am so grateful.
These days anyone who meets him would never guess he had once been so weak and compromised. He is strong and fearless. His check-ups have gone well, and we’re told there should be no long-term effects of his condition. He’s been given the green light to live life to the fullest, and he does.
For the most part, we do too, managing the challenges that come with a cheeky preschooler and trying desperately to stay one step ahead of his development and increasingly interesting questions. But now and again, like at the bike park last week, the fear rushes through me and I’m back in Intensive Care, hearing the beeps of the machines and smelling the powder in those plastic gloves. There’s not much I can do with these memories but be grateful for where we are today and spare a thought for the parents currently in the thick of what we’re lucky enough to have survived
