Jenna’s Essay

When I think about how I have been affected by congenital heart disease, the emotions that come up range from grief to gratefulness with anger and joy all mixed in.

My son was born in May of 2018 with Hypoplastic Left Heart Syndrome (HLHS), a rare and severe congenital heart defect that renders the left ventricle unusable. Liam was just 11 days old when he had his first open heart surgery. As a mother, I was terrified for my son and angry that such an innocent little boy had to go through so much physical pain to survive. I grieved over the vision of a family life that would never be. I was sad my 2-year-old daughter had to shoulder so much of the world at such a young age.

Our lives were turned upside down when Liam was born, but there was also immense joy. Joy when Liam was taken off the ventilator, when we were able to take him outside for his first glimpse of the sun, and when we were able to bring him home for the first time, at 6 weeks old. It seemed as though we had not known true joy before Liam arrived.

As Liam got bigger and stronger, we counted each day that wasn’t spent in the hospital a good day. It didn’t matter if there was spit ups or blowouts. Liam’s hard days in the ER or in a hospital room made us appreciate the everyday, mundane activities at home. Finding joy and appreciating every moment has been a lesson we continue to carry with us.

Liam underwent two more heart surgeries- one in September of 2018 and the last in July of 2020. Each operation sunk me into the lowest valleys of sadness and despair. Each discharge lifted my heart into the stratosphere. And in between those troughs and crests, there was delight in what words he would be signing or saying next. There was victory in first scoots and then steps. There was also exhaustion and worry.

When Liam’s heart unexpectedly went into a fatal arrhythmia in September of 2020, I was devastated. What had all this struggle been for if not for this little boy to grow up and thrive? In this place of immense grief, doubt, and self-recriminations came the realization our job as parents is not to protect our kids from all harm, but to give them every chance at happiness and the emotional tools needed to survive in a harsh world.

If we’re really lucky and we pay close attention, our kids will teach us something about living as well. Congenital heart disease took away my son, but the way he lived his short life with CHD taught me each day on this planet is a gift. I don’t have to do big things to find meaning. Meaning is all around- I just have stop and take the time to appreciate it like Liam did every day.