The Pratt's Guide to Heart Warrior Parenting

Note to the Reader: This was written right after Liam's discharge following the Fontan in July in its entirety, prior to the events that precipitated Liam's death. Liam died on September 13th following an unexpected cardiac arrest caused by an arrhythmia on September 12th.  As I saw Logan pull into the driveway with Liam from my bonus room office this afternoon I was surprised to feel what seemed to be 100 pounds fall off my chest. I don’t think I had realized what kind of burden I was carrying. While we don’t know what still lies ahead, all the certain challenges are done. The unknown is still scary, but now I have the capacity to hope the hardest things are behind us for a while. When you live a life in fear for two years knowing earth shattering events are just around the corner, there’s a certain kind of relief with having it done.  If you remember what it felt like to break a vase or some other family relic and then realize your parents were going to be furious with you...

If you had told me in early June that by mid July, Liam would be headed for his Fontan procedure I would have shook my head in disbelief. Of course, if you had told me this time last year that in 2020 we would all be wearing masks and social distancing because of a virus raging around the world without a cure, I would have mistaken you for one of those guys on a street corner holding a sign saying, “the end is nigh.” This year continues to cement in our hearts the knowledge the plans we make cannot withstand the forces of time and chance. It is a lesson we all learn, forget, and learn again with each unexpected turn our lives take. The Fontan procedure is the final stage of a 3 part palliative surgical approach to Hypoplastic Left Heart Syndrome. In it, surgeons will disconnect the inferior vena cava (ivc) from the heart and connect it to the right pulmonary artery (rPA). In Liam’s case, they will likely add a fenestration (a connection that links the heart to the IVC). I have provi...