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Why Caring for My Son With a Congenital Heart Defect Is Like a Marathon, Not a Sprint

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I was at a conference last weekend, working with other parents and practitioners across the country to improve outcomes for children born with hypoplastic left heart syndrome (HLHS) like my son.

At one of the breakout sessions, there was a comment about “the HLHS journey is a marathon, not a sprint,” and we needed to make that clear to parents at the time of diagnosis.

I totally get the analogy. It’s perfect. I used to run marathons. 

Well “run” is a loosely defined term. In my case, it was more like “slog,” a term my dad coined to refer to my slow jog. So you get the visual. I’m no Olympic athlete. But I get the concept of the difference between a sprint and a marathon.

And it’s true that this journey with complex congenital heart disease, or any complex medical condition for that matter, is a marathon. It’s a lifelong battle. It is with my son and always will be. And, for that matter, with his father, who also has a congenital heart defect, albeit different and less severe than my son’s.

But there’s difference between an actual physical marathon and the marathon of raising a critically ill child. In the physical marathon, you can choose how to pace yourself. You know what’s coming and how to prepare yourself. You can drive the course beforehand and map it out. You can train the most effective way.

But when you’re raising a single ventricle kid, you don’t get that luxury. You can’t “slog” the whole thing even if you wanted to. With complex heart defects, sometimes seconds do matter. Minutes matter. You can’t rest on your laurels and slog if the time has come to sprint.

Children with single ventricle hearts need at least three open-heart surgeries just to survive. You are out of the gates sprinting to the first surgery, and then you’re sprinting to that second surgery, the one that gets you your ticket to a more normal life. And then you catch your breath for a second or two, but then you’re sprinting to that final destination — the “Fontan” operation. (And if you’re lucky like us, you’ll stop sprinting momentarily between the planned surgeries for some extra bonus surgeries or complications.)

And when you get out of that final planned surgery, you’re exhausted. You have been sprinting for somewhere around two to four years give or take, and you’re done.

You’ve arrived in the land of milk and honey. You’re looking around for your medal (which comes in the form of pink fingernails and toes) and counting the minutes until you get to soak your muscles in a hot tub and get a really good night’s sleep.

You pat yourself on the back because you’ve made it. Other parents say, “Congratulations!” because they know this, being post-Fontan, is what you’ve trained for and accomplished. And it is a huge accomplishment in its own right.

But then, you feel someone poking your shoulder, and you turn around to hear them saying, “Oh, you’re not done. You don’t get to rest. Now the marathon part starts.”

And it sucks. Because you’ve been sprinting so hard for so long that you’re all out of Gatorade and energy bars. You’re even out of the gross energy gels, which are saved for dire circumstances when you really had no other choice. Even the water stations are long gone. So you have no reserves left. Literally, you’ve got nothing. The last thing you want to do is start running a marathon.

But you get up and start running. Or “slogging.” Or crawling. Because you have no choice. Your child’s life depends on it.

And you figure out how to rebuild your reserves. On the easy straights and the downhills, when your child is doing well, you rebuild your faith community and rely on family. You build new relationships. You find yoga and meditation.

Because there will be hills and tough parts, you’ll have to have some reserves to tackle them. That is the nature of the Fontan single ventricle physiology. The Fontan physiology affects so many organs, and there are so many opportunities for complications and issues to arise. 

We know the hills that have taken down those who went before us. We know the nasty turns they have faced and the places they’ve been surprised and ran out of resources. And we thank God the doctors are working their hardest to minimize the impact of those hills and trying to provide more resources. And they are. 

But the truth is, we don’t know what path our child will take. Every child has a different marathon route.

Some kids sail right through nary a complication, and things are great for a very long time. Others never make it past the start line. And the vast majority fall somewhere in the middle.

Some — like my dear friend, Jennie, with her sweet Tyler — seem to be in a constant sprint over hills most of us can’t even imagine climbing. And yet she sprints with ease because that’s what she has to do. Others don’t seem to have too many hurdles — yet. But this journey can change at a drop of a hat.

Tonight, my spunky sweet 6-year-old said he didn’t feel well out of the blue and fell asleep within minutes — with oxygen saturations that would make a grown man pass out. He should be fine by morning. He probably would be fine and chipper if I woke him up right now. But I’m not going to because then I’ll have to explain why I stress ate half of his Halloween candy waiting for his saturations to come back up. In my defense, did I mention that chocolate is also an excellent coping mechanism on this marathon? 

So yes, this is a marathon, not a sprint. Except that there’s a heck of a lot of sprints along the way. So to the newly diagnosed, I would say gather your resources now. Find a friend on this marathon with you. Know that this journey will be challenging. And keep your eyes peeled for those spots where you don’t have to sprint. Because those days will come. Sit back and relax and breathe where you can. Because I promise you, there will be many days on this journey where you will be forced to sprint with no reserves in your tank. So take the time to fill your tank where you can because this journey is hard.

But I can also promise you, it is so, so worth it. Every smile and moment you get with your brave warrior is worth it. Take it from a mom in between sprints. It’s worth it.

Honestly? There’s no one I would rather be on this sprint/marathon/really-just-one-long-sprint with than this kid right here.

Follow this journey on Hope for Baby Bennett.

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Originally published: November 10, 2016
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