Watching as your baby gets taken into the operating room isn’t something you ever get used to. But if it has to happen, Sainte-Justine is exactly where you want to be. If somebody had told me before I gave birth to Nolan that he’d be going in for open-heart surgery on Valentine’s Day, I wouldn’t have believed it. But that’s exactly what happened on February 14, 2023.
When I think back on it, it’s almost like it was a sign: our story was meant to be told straight from the heart.
(in French only)
The first complications emerged early in my pregnancy. Nolan was very small, and an ultrasound at 20 weeks showed his heart was enlarged. We were transferred to Sainte-Justine, where we were told it was a severe case of a rare heart defect known as Ebstein’s anomaly. The probability of his making it to delivery was one in two, and one in five for surviving after that.
My maternal instinct kept telling me to give my baby a chance, despite the odds being stacked against him. From that point onward, I went in for regular appointments at Sainte-Justine’s Fetal-maternal clinic. The number-one priority was protecting Nolan’s heart while he grew in my womb.
They also kept a close eye on me. When Nolan’s heart went into tachycardia and arrhythmia in utero, I was admitted. They sprung into action to find a drug that would treat his heart without interfering with mine, which had already been weakened by radiation therapy during two previous bouts of cancer. But we were in good hands. Sainte-Justine is uniquely equipped to deal with high-risk pregnancies like mine and very sick little babies.
Nolan ended up beating the odds. He was born on January 11, 2023 at 35 weeks. The first thing they did was to stabilize his heart. He also had a bowel infection that needed tending to. His operation on February 14 was next to improve the flow of blood between his heart and lungs.
The sense of relief I’ve felt since Nolan’s surgery is palpable. He pulled through like a champ. I know that lots of other children with serious heart conditions don’t fare as well. Having the support of a whole community of donors makes a huge difference in enabling the professionals at Sainte-Justine to be innovative in their approach, so that mothers like me and babies like Nolan can receive the very best care, no matter where in Quebec they are.
Nolan was operated on twice more in the months after that first surgery. It wasn’t easy, and we at times feared the worst. But guess what? His most recent operation changed everything. All of a sudden, he had more energy and more stamina, and he grew, almost overnight. We enrolled him in daycare. He’s doing so well now that his doctors think he might not need the fourth operation that he was supposed to have when he turned four.
Our journey at Sainte-Justine isn’t over just yet. We’ll be back for checkups in cardiology, physiotherapy, nutrition and physiatry. But thanks to your generosity, combined with the talent and compassion of the people who have taken such good care of us since day one, I know a big part of the battle is already won.
On behalf of every baby and every mother whose lives have been changed by the one-of-a-kind expertise at Sainte-Justine, and the kind contributions of people like you, I thank you for being there for all of us.
Catherine
Nolan’s mother
*The views and opinions expressed in this article belong to the author and should not be considered to be those of the CHU Sainte-Justine Foundation.
© Véronique Lavoie
Opening your heart and saving lives
Grateful for the life-changing care they have received at Sainte-Justine, Nolan and his mother will be serving as ambassadors for this year’s Mois des Câlins at Sainte-Justine.
Thank you for opening your heart and helping children like Nolan grow beyond what we ever imagined. You can support journeys like his by picking up your Clarins “Rose Câlins” Lip Perfector exclusively from Jean Coutu (while supplies last). For every $20 tube sold, Jean Coutu and Clarins will donate $10 to the CHU Sainte-Justine Foundation. Together, we have the power to bring hope and the promise of the highest-quality health care to the children and families who need it the most.
Protecting little hearts from conception onward, with your help
With every donation, you are having a direct impact on expectant mothers throughout their pregnancy and on the healthy development of children as they grow.
