“There’s a problem with your baby.” I’ll never forget those words. I didn’t know it then, but that was the beginning of a long and challenging journey during which our little Théa had to fight for her life more than once.
At 20 weeks into the pregnancy, during the anatomy ultrasound, we were over the moon at the idea of finding out whether we we’d be having a boy or a girl. Of course, like everyone, we were thinking, “as long as the baby’s healthy.” But until we experienced it for ourselves, we never gave much thought to the flipside of that statement. Having a sick baby is the kind of thing that happens to other people.
The ultrasound took a long time. Far too much time. The words “your baby has a diaphragmatic hernia” still resonate in my mind. That marked the beginning of a year filled with stress and worry in our lives as new parents.
Théa’s hernia was enormous: her liver, bowels, stomach and other abdominal organs were all located in her thorax, preventing her little lungs from growing and developing. They took her lung volume readings regularly, but the results kept coming back the same: Théa’s left lung couldn’t be seen in any of the tests, and her right lung was tiny. Despite the magnitude of the complications facing our unborn daughter, we refused to terminate the pregnancy. That was never an option for us. We were determined to do everything in our power to make sure the future would be a bright one for her.
Given how rare and complex Théa’s condition was, Sainte-Justine referred us for experimental in utero surgery in Toronto. The goal was to maximize her chances of surviving outside the womb by speeding up the growth of her lungs before she was born.
Théa came into the world on September 25, 2019. She proved to be strong enough to face the challenges ahead. She underwent a series of surgical procedures at Sainte-Justine, including having a gastrostomy button and an anti-reflux valve put in. It turned into a marathon six months at the hospital, several of which were spent in the NICU.
There were lots of complications along the way. Our daughter’s life hung in the balance many times. But she defied all the odds and graduated from Sainte-Justine like a champ, ready to live her life like any other child.
We were home by March 2020, right at the outset of the pandemic. She was on oxygen at night, was hooked up to a feeding tube and had a whole drug regimen to follow. These days, she’s breathing on her own, her G-tube is gone, and she’s medication-free. She doesn’t have any memories of that part of her life. She’s like any other three-year-old you’d meet. But we definitely remember everything she’s gone through. As her father, I’ll never forget it. And I still find it hard to treat her like a normal kid.
Being the father of a sick child
I think I’m a dad who’s pretty in touch with his emotions. My tears have flowed more than once during this journey of ours. They still do, even though our daughter is doing well now. But I often held back, thinking, “I don’t want my partner to see me cry. I have to be strong for her and for Théa.”
As a father, you often feel like you have to “be strong” for your family. But if there’s one thing this ordeal has taught me, it’s that we can — and should — be vulnerable, too. The real strength is knowing how to make it through the tough times and celebrate the victories as they come.
« Every day, even though there’s still the stress of knowing that my daughter is living with an artificial patch that keeps her organs in place, I try to be the best dad I can be for her. I try to let her be a kid, and I’m proud of being the kind of father who isn’t scared to show his emotions. It’s very important to me that she sees me feeling both sad and happy. »
Throughout her long hospital stay, I never felt like any of the nurses, doctors, surgeons or other staff members were judging me on how I reacted. In fact, the NICU and Sainte-Justine as a whole felt very much like a second family. It was a place where I felt safe, and where they understood what I was going through. I’ve cried a lot in front of the teams there, and their support and caring meant the world at some of the most difficult times of my life.
No matter who you talk to at Sainte-Justine, they’re great at communicating, getting complex ideas across and reaching out to parents who are going through the most gut-wrenching experiences imaginable. There are no words to describe how grateful I am to all of them. Some have even become friends over time.
A pledge to give back
Donations are vital in caring for sick children. But it’s easy to forget that parents, too, are on the receiving end of the services provided by the teams at Sainte-Justine. Contributions go toward supporting the expertise of a wide range of specialists who make a huge difference for families. From the psychological support we get to the practices designed to make medical processes gentler and easier to understand, we as parents are very much on their radar, especially when the going gets tough.
For Théa’s first birthday, we raised $1,500 on behalf of the CHU Sainte-Justine Foundation, and we have since become monthly donors to show our support for the most important work there is: delivering outstanding care to children and mothers-to-be. Donations are the reason children like Théa, whose chances of survival were slim, can make it through and end up leading a wonderful life.
Today, Théa is a curious, funny and playful little girl. And she can be all this and more because of everyone at Sainte-Justine, who saved her life. Regular check-ups with her specialists only go to prove that we have the best possible caregivers for both her and her little brother, Arno (who I’m happy to report is the picture of health). They both have the same pediatrician.
As a dad, I feel as involved in Théa’s ongoing care as her mother. And I feel lucky and privileged to have been there for my daughter at every step of her young life. As we celebrate Father’s Day, my message to the dads in the Sainte-Justine community and beyond is this: you’ll never regret giving your all to your children and being there for them in every way.
Jonathan Robidoux-Demers
Father of Théa and Arno
