I was 16 weeks pregnant when we found out that our baby had several heart defects. Strange to say, but as a medical ultrasound technologist, I was the one who discovered them in a not-quite-legal act of “self-ultrasounding”. I quickly paid the price in karma when I saw her buttery little heart. At that moment, mine stopped beating. I put the probe down and tried again every day, telling myself that it would go away the next day – it had to, didn’t it? Instead of disappearing, the next day and the days after that, right up to the birth, all kinds of scenarios about his heart and health were running through my head. At the first meeting with the fetal cardiology team following his first echocardiogram, I received a small brochure from the En Coeur Foundation. I read ALL the available online documentation, without exception, and it was very helpful in answering many of the questions I had about what to expect in the weeks and months to come. Honestly, some of the subjects were difficult to read, such as the one on the child’s death, but I preferred to arrive as prepared as possible. And even more honestly, nothing can 100% prepare a parent to get through seeing their child undergo one (or more) open-heart surgeries, no matter how old they are…
Our handsome Léon underwent his surgery in February 2025, at 8 days of age. He was born with a transposition of the great vessels, a double outlet right ventricle, an IVC and an ICA. The Foundation was generous enough to offer us a parking tickets for the entire period of our little darling’s hospitalization, as well as tickets for our meals every day. After spending all day in hospital, the last thing I wanted to do was cook, I just didn’t have the energy. Is hospital food always the most delicious? NO, but it’s usually soft, so you can quickly eat and spend more time with your baby afterwards! (OKAY, a little humor to lighten the mood). Reading and hearing other parents’ testimonials is probably one of the things that has helped me the most on my journey, I’ve also attended online workshops where parents opened up about the challenges of having a child with heart disease: the guilt, forgetting to take time for yourself, not knowing how to talk to your older child about his heart condition, etc…. the topics are all as varied as they are relevant. To all parents who are or will be going through this, don’t forget that on the most difficult days, everything passes in the end.
I wish you courage and resilience, because your child already has it, and is just waiting for your arms! xxxx