A New Plan

Finding out your child will be born with a heart defect may cause some of the plans you have for them to disappear, it may cause you to question whether you can be the parent to them that you hoped. Read how dad, Matt, learned to adjust his dreams for his son and encourage him to do HIS best.

Like any dad, I had dreams of all the things I would do with my kids as they grew up: play catch and teach them to throw a Frisbee; build blanket forts and maybe a treehouse; wrestle and roughhouse with them. I saw nerf guns, laser tag, and video games in my future. I imagined the things I would get to teach them. I prepared my best Dad Jokes and confidently imagined I could manage on little to no sleep (LOL). Then we got hit with the news: “There’s something wrong with your child’s heart…” and all those dreams were suddenly in question.

My story starts out the same as most others. We had just bought our first house after moving to Maine 7 months before. Following some frantic remodeling while moving in during an already hectic month of December, we found out we were pregnant with our second child. After announcing it to my family when we visited over the holidays, we came home to settle in to normal life.

Next came the ultrasound, and the first inkling that something was wrong. When the technician said she couldn’t see the heart well enough and that the bigger hospital in Portland had better machines, I was pretty sure something was up. But you can’t call them on it, and you can’t expect them to be up for breaking that kind of news. So it was off to the bigger hospital for a second go around and an official diagnosis: Hypoplastic Left Heart Syndrome with Transposition of the Greater Arteries (HLHS w/TGA).

With an official diagnosis in hand, the shock sets in. This is when the dreams start to crumble. They will eventually be rebuilt, but for now there is very little other than “what does this mean and what do we do next?” repeating over and over in your head. Followed by “Okay, so we do the surgeries and then what? What kind of life will he have?” It’s traumatic. Even as I type this, tears are in my eyes just remembering what it was like. As if that isn’t enough, now you have to find a way to tell everyone and answer questions that you barely comprehend yourself yet. It seems silly, but for me that was almost harder. Maybe it has something to do with saying it out loud that makes it feel more real.

One of the few things I remember thinking on the way home from that second ultrasound (it must have been February) was “Hey, at Valentine’s Day, he’ll only have to give out a half of a box of chocolates.” I use that Dad Joke a lot now when I tell people about Owen, it makes them feel a little more comfortable asking questions and talking about him. There are other jokes too. Like how I’ve prepped him in case a teacher or coach ever tells him he’s being half-hearted in his work effort: “Sorry, that’s all I’ve got” he’ll say (at least in my mind). We’ve even gotten him in on it: when he puts up a heart symbol he only uses one hand instead of the normal two. For me, it’s a part of that rebuilding of dreams I mentioned.

That’s what we have to do as CHD parents. We have to rebuild our hopes and dreams. We have to find our way back to being able to imagine a life for them that is not very different from that of our other kids. We need to recognize that the trauma is real and a valid part of our stories. But I want to tell you that initial trauma is not your child’s story. They weren’t there for that, and I personally don’t think we need to pass it on to them. There will be lasting effects from the surgeries and there will come a day when they realize that they are different, but why start them out with it? Why share your trauma with them too?

Yes, they will have trauma, it will come in stages as they realize what their CHD diagnosis will mean at different points throughout their life. Yes, they do have to be more careful with some things, like sibling rough housing. They have more doctor appointments. They have to be more cautious about germs. They have to learn to stop and rest more often. They will get cold in water due to bad circulation. That is all true, but it’s not where their definition of self stops. It is only one part of their self definition. Like where you live and whether you like ketchup or mayo on your burgers (by the way, if you use mayo there is something very wrong with you☺). Yes, these are all a part of who you are but they are not the whole. Nor are they the final product.

We made a decision early on to not bubble wrap Owen. We knew that if we let ourselves do that, we would be in a constant state of stress and worry. So we never told him that he was anything other than a normal kid who just happened to only have half a heart. We kept our fears and worries to ourselves and let him run, let him fall, let him be as normal as we could. A lot of people told us he was brave and that he was their hero. To me, real bravery isn’t going through the surgeries and surviving them, that’s something that happens to you—something you don’t get to choose. Real bravery is living a life as normally as possible after the surgeries are done.

That will mean different things for everyone. We were lucky with Owen: he had no further complications. He had his Norwood at two days old and came home only fourteen days after he was born. For his Bi-Directional Glenn, he went in on a Wednesday and came home on a Saturday. The Fontan was a little more complicated and we were in and out a couple of times over a month and a half before he was home and off of oxygen. But even then, things went back to normal fairly easily.

Now Owen is a Ninja Warrior and a Parkour athlete. He can hang from the monkey bars for 8 minutes without stopping. He can go up and down Devil Steps without hesitation. He competes in competitions for both of those sports and blows everyone away with his tenacity and skills. He is also a proper nerd who loves Tabletop Role-Playing Games like Pathfinder and Starfinder or anything else involving lots of dice. He does math and science for fun on his days off of school. And, yes, he loves video games and youtube videos. All of that is just Owen doing what he loves. And while it’s not technically correct to say he only has half a heart, it is still the easiest way to explain it to those not steeped in the knowledge of the CHD world. And it is true enough. He will only ever function using half of his heart. Besides, we already nicknamed him the Half-Hearted Ninja, so we can’t go being picky about it now.

Your heart warrior may be confined to a wheelchair or get exhausted after a few minutes of walking. Your heart warrior may have developmental delays or secondary diagnoses. That just means you adjust your expectation bar a little and continue to encourage them to be the best that they can manage. Help them discover their lives and passions as you would any other child. Yes, this is our story as CHD parents. But even more, it is their story. One day, they will be out on their own. One day they will chase their own dreams. We love and push our heart healthy kids to be and do their best; why shouldn’t we push our heart kids the same way? It’s our story for now, but it’s going to be their story someday and it’s our job to get them ready for that. Let’s be brave enough to rebuild those shattered dreams and move forward with hope and life.

Matt Westerlund is both a dad and a heart dad who lives in Maine with his wife and two boys. When he isn’t watching his kids at the ninja gym he likes to play board games, table top rpg’s, and occasionally enjoy the outdoors via hiking and disc golf. You can catch a glimpse of the ninja crazy on instagram @Matt.Westerlund or Twitter @MattWesterlund

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