Forever a Heart Mom: What I’ve Learned Since My Baby’s Heart Surgery
Written by Jenn Wint.
Did you know? February is Heart Month and February 7-14 is Congenital Heart Disease (CHD) Awareness Week. Roughly 4,400 newborns will be born with this every single year.
Recently, my daughter was in the hospital for a minor procedure. As I knelt down in her room to adjust the bed, I caught a familiar smell. The unmistakable mix of disinfectant, plastic, and something else. In an instant, the smell transported me back ten years to the Pediatric Intensive Care Unit at BC Children’s and the stomach-in-knots-fear I felt being there with her older brother.
Today, my son is nine years old and thriving. Most days we’re rushing from afterschool activities, to sports practice and negotiating video game time. He’s smart, witty, curious and athletic. It’s hard to believe he was a frail, sick baby. But from time to time, I remember. There are experiences, especially tough ones as a parent, that get buried inside. The beeping machines. The waiting. The sharp breath I’d take as a nurse walked over with news. In a moment or with a smell, it can all come rushing back.
February is Heart Month
That recent afternoon in the hospital was actually quite timely, in the lead up to Congenital Heart Disease (CHD) Awareness Week and the hospital smell made me want to revisit the memories. As part of Hearth Month, CHD Awareness Week runs February 7 to 14. It’s a time dedicated to awareness, advocacy, and education. For families like mine it brings reflection and a need to share my story so that other parents might feel less alone.
When I received my son’s diagnosis, a decade ago, at my 20-week anatomy ultrasound, I had never heard the words “congenital heart disease.” I thought heart disease was for older people, who smoked cigarettes. I didn’t know any families navigating CHD. I didn’t know the statistics. I didn’t know how common it was. I didn’t know many babies are born with it every day and live healthy lives. All I knew was that the pregnancy, birth and the parenting journey I was expecting had just taken a turn.
What I wish I’d known then is that CHD is the most common birth defect in Canada, affecting 1 in every 80–100 children, or roughly 4,400 newborns each year. And that more than 257,000 Canadians are currently living with congenital heart disease. I felt so overwhelmed and scared in that doctor’s office. I wish I had understood the support we would receive and the community we would become part of. I also wish I’d known that he would be ok.
For anyone facing this diagnosis, or supporting someone who is, these are some things I’ve learned since my baby’s heart surgery.
1. Fear and hope coexist.
I learned quickly that fear and hope show up together. I flip flopped between terror of losing him, joy at new motherhood and feeling completely numb. Being hopeful for the future doesn’t cancel out the fear that the future might not come. The emotions exist side by side, coming in and out with every moment or check up, especially in those early days.
2. The diagnosis is not the end of the story.
With a new diagnosis, everything feels definitive, as though your child’s future has already been written. It hasn’t. Medical advancements, surgical expertise, and ongoing care mean that many children with CHD grow up to live full, active lives with weird and wonderful personalities. We meet people today who are shocked to learn he’s had open heart surgery.
3. Trauma has no timeline.
Years later, I can be caught off guard by a smell, a hospital bracelet or watching him fall off his bike and watching for his lips to go blue. Healing isn’t linear. Your body remembers what your heart went through and sometimes you get reminders of the experience when you least expect it.
4. Community is essential.
I didn’t know anyone with a CHD child at diagnosis, but over time, those connections found me. Other parents, advocates, the incredible nurses and doctors at BC Children’s Hospital. There are people who understand and there are even more people who care and leave a lasagna on your back porch.
5. Awareness changes outcomes.
Awareness leads to earlier diagnoses, better support, more research funding, and stronger advocacy for families. It reminds parents sitting in ultrasound rooms today that they are not alone even if it feels that way in the moment. Stories and experiences are powerful connectors that give others the space to share and support each other.
6. Gratitude doesn’t make parenting easier.
Once we knew he was going to be okay, I promised myself I’d be the best mom. I’d be endlessly patient and never raise my voice. That didn’t last. A child surviving life-saving surgery doesn’t mean they won’t frustrate you or push your buttons daily. Gratitude doesn’t cancel out exhaustion or hard days.
7. You have to make peace with the past.
There isn’t a known cause of CHD, but that didn’t stop me from looking for one. Was it something I ate? The overseas trip we took? I’ve carried self-blame for years but I’ve had to make peace with the fact that we may never know and that there’s nothing I can do now to change it.
Beyond the Diagnosis
CHD Awareness Week and Heart Month aren’t just about facts, statistics and raising money. They’re about families, stories of resilience, parents and patients learning to live with both gratitude and anxiety simultaneously.
These days, my son is defined far more by his sharp sarcasm, strong opinions, and out of control scooter riding than by the heart surgery he had before his first birthday. He’s proud of his scar and his story, and so am I.