A Season of Strength: Liam’s Story
Written by Darian
We found out at our 20-week anatomy scan that Liam had a special heart! We were told that his aortic arch was going the opposite way that it typically should. Something that makes him unique, but also something lots of people live with and never know. We just know because of modern medicine 🙂 We were so happy to hear he’d never need surgery. Liam was born on December 8, 2022. After he was born, an echo confirmed that his condition was more complex than they originally thought, and he needed open heart surgery.
Surgery was scheduled right before his first birthday! We did lots of preparing and planning for what to expect, which was supposed to be a 4-6 day hospital stay. But we never prepared for complications. You truly never think those ‘complications’ the doctors talk about will happen to you… until it does.
About 24 hours after surgery, Liam was doing great. They took him off the ventilator, and we thought, We’re finally on the other side! We can finally start recovery and put this behind us, but later that day, Liam started to show major difficulties breathing. After trying one thing after another to help him, it was decided that putting him back on the ventilator was the best option, where he remained for the next week. That week felt like an eternity. Doctors trying to figure out what’s going on, so many unknowns, overwhelm, regrets of planning surgery right before his first birthday, and just so many emotions.
After lots of testing and scans, they found that Liam has tracheomalacia as well as a paralyzed diaphragm. But by the grace of God, Liam was able to come off the ventilator on December 8th, his first birthday! And now, he is a thriving (almost) 3-year-old!
On top of the findings causing his breathing issues, we also found later in his recovery process that his left vocal cord was paralyzed as well. This caused him to have a feeding tube for about 6 months, and he finally graduated to thickened liquids. Fast forward to now, Liam started swallowing therapy this summer and has finally been able to eat popsicles, slushies, ice cream, and drink from a ‘big boy cup’ like his brother. Something that may seem little to others has been a huge deal to Liam!
Throughout Liam’s recovery, he’s been a true Heart Hero! He amazes us all the time, and it’s never slowed him down. Heart Heroes means so much to us! When things went off track with Liam’s health, we were overwhelmed, anxious, and really just needed someone to talk to who knew what we were experiencing. This is where Heart Heroes truly saved us. We met another mom and dad who were struggling too, and it helped us not feel so alone in what felt like a very isolating and overwhelming time. It helped with our older son as well. Of course, mom, dad, and brother being gone for a month was not what he expected either, so with the holiday events Heart Heroes puts on this time of year, it really helped bring a little bit of normalcy for us, even being in the hospital. We’re also grateful for the care and support Liam received at Children’s! We met so many amazing nurses/RTs/therapists who will always hold a special place in our hearts!
