The Fontan and the Fountain

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 provided a picture below to show interested readers what a completed fenestrate Fontan looks like. They will also need to unband his rPA and remove the BT shunt used in the Super Glenn. It’s a 5+ hour procedure. If things go well, we can expect a 1-2 wk hospital stay for recovery, more if things go mildly awry, less if things go 100% sideways.

We do our best not to think of what life would be like without Liam, but it is also fiction to say the possibility hasn’t crossed our minds more than once and certainly more often the closer we come to this surgery. We knew there would be risks before he was born, but there is a chasm one hundred miles wide between knowing about them and living them.

It is easy to be completely controlled by the fear of what happens after Liam is wheeled out of my hands and into the OR. It is an old trope we humans can’t seem to escape- trading the hope of Jesus for anxiety and fear. The Prophet Jeremiah says,

“For My people have committed two evils:

they have forsaken Me,

the fountain of living waters,

to hew for themselves cisterns,

broken cisterns that can hold no water.”

This is my go-to move. I continually forget Jesus offers fresh water from an endless fountain, particularly when I’m in a panic, clawing at dry, desert ground in the vain hope that just below the surface there will be water. Why I cling to statistics and the experience of surgeons is likely because as humans it is in our nature to cling to anything that helps us feel some modicum of control. Why I insist on believing the delusion that control is within my grasp after all this time baffles me.

Tomorrow, I will kiss Liam goodbye in the early hours of the morning as he is taken to an uncertain fate. Surrendering him to physicians to cut him open and mess around inside his chest cavity for most of the day will be gut wrenching, but it must be done.

Surrendering Liam’s fate to Jesus is necessary, but just like surrendering him to doctors, Jesus does not guarantee a positive outcome. He’s not a superstition or a good luck charm. Surrendering to Jesus is just acknowledging that I, in fact, do not have control and regardless of outcome tomorrow I need Him to be my peace. Trusting Jesus does not mean I believe Liam will live to see me in my grave. Trusting Jesus means I believe whatever happens tomorrow and in the days to come will be made to have a holy purpose. It is only in surrendering that such a purpose can make these huge events in our tiny lives matter beyond ourselves.