Be The Hero!

This is the text of my presentation to the Saving Little Hearts/Mended Little Hearts Congenital Heart Defect Symposium:

My name is Steve Catoe, and I am a 42-year-old Congenital Heart Defect survivor. I was born in 1966 with Tricuspid Atresia.

Let me tell you just a little about Tricuspid Atresia. “Tricuspid” refers to the Tricuspid valve, which is the “door” that your blood uses to travel between the Right Atrium and the Right Ventricle. When you translate “Atresia” from Latin into Southern English, it basically means “it ain’t there!” Now this would be OK if there was a pathway of some kind – just a hole without a valve – but that valve never formed at all. There is a wall where it is supposed to be. So my right ventricle is almost cut off from the rest of my heart – 25% of my heart doesn’t work.

That’s a pretty simplistic explanation of my heart, but I know my defect in much greater detail than that – I just didn’t want to put you to sleep this early! There are over 30 different Heart Defects and I only know mine. The only Heart Defect that you really need to understand is the one that affects you.

I’ve had two and a half heart operations: The first one was a Glenn procedure, done at Johns Hopkins Hospital in Baltimore when I was five months old. It’s not the Bidirectional Glenn, I have the original version of the operation and it only sends blood to my right lung. My second operation was the Blalock-Taussig Shunt, done at the University of Alabama at Birmingham when I was ten. And my final procedure was supposed to be a Fontan, also done at UAB right after I graduated college. When they opened my rib cage scar tissue tore and I began to bleed out. They had to cancel the procedure and give me twenty units of blood, but since I got all the pain and recovery time “free of charge” I count that as half an operation! I also have a pacemaker, and was pretty disgusted to learn that it gives my heart rhythm but not my feet. I can’t dance!

I also write a blog named “Adventures of a Funky Heart!” and I try to tell stories from my life growing up, the latest research, and news about advances in Congenital Heart care. I try to make it interesting and inject a little humor. Because when the doctor pulls you aside and says “We think there is a problem with your child’s heart…” your world collapses. Suddenly you’re living a bad dream that never ends. You have to learn everything you can about a complex organ, and you have to learn it as quickly as possible. I feel that I can help by giving you the information you need – in small pieces, so you don’t get overwhelmed. By using a little humor, hopefully I can show you that this is not the end of the world. Now you will certainly be tested, and you will have to travel a difficult road, but if I can make you smile and keep coming back to read more, maybe I can help you see that you really are stronger than you think you are.

I give people titles, I’ve found that it helps them not feel as alone as I did when I was growing up. Rather than be labeled as that sick child, our CHD children are Cardiac Kids. And only 1 in 125 children get to be a Cardiac Kid, so there must be something special about you! When you get a little older and being called a kid isn’t so cool, you transform into a Heart Warrior. And our parents are Heart Moms and Heart Dads. You guys never gave up on us, and you understand better than anyone that a heart defect doesn’t just break one heart… it breaks three.

Most of what I have to say is to the Heart Parents who are here. The first thing I need to say is do not blame yourself. No one knows exactly what causes a heart defect. It could be environment, it could be genetics, and it could be a mixture of both. Mom, by the time you go home and tell your partner that you are pregnant, the heart has already started to form. If there is a problem with the heart it is already starting to happen. You don’t know it and you can’t control it. But what you can do is fight. Fight for us – ask one more question, explore one more option, go one more mile.

Your child will have to fight their toughest battles on their own. I’m not just talking about in the Operating Room and the ICU. The most difficult battle takes place on the playground at their school. We’re different – and when you are young, “different” isn’t always good. They will have to learn how to deal with questions like “How did your lips get so blue?” and “Boy, can’t you run any faster?” So please, for their sake, don’t turn into helicopter mom. Your child didn’t come with a tough skin, they’ve got to build it up, and the only way they can do that is to learn to interact with other people. They’re children, so naturally they are going to play, and every now and again they are going to come home with a bump or a scrape. Don’t panic and make a childhood injury more than it is. I stepped on a buried bottle when I was 13 and sliced my foot up pretty good. But I survived it with stitches, crutches, and a tetanus shot.

Oh, but they will test you. Your Cardiac Kid will be into everything, and you’ll have days when you think you are living an adventure movie. They aren’t really being mean or rebelling, it’s just that when we want to just dive in, you’re the one who has to keep thinking clearly. It’s not personal. But be prepared for anything. We were vacationing with an older couple and the man said he’s like to try that new double barrel roll roller coaster. So I volunteered to go with him, ignored all the warning signs, and had the time of my life! But Momma was walking along the Midway just as we zoomed over her head. Let’s just say that you can be grounded while on vacation!

Right now you are the best advocate for your child’s health. No one knows their heart defect better than you, so you have to stand up for them. Until they can make their own decisions, this is really your heart problem. So learn it backwards and forwards, and don’t be scared to say “I don’t understand, you need to explain it again.” Make the best decision you can with the information you have, and don’t ever spend time thinking “If we had done this…” That’s non productive and you’ll start second guessing yourself. So avoid that and have the confidence to make the decision.

Never let a child be defined by their Heart Defect. I think that is the one thing I purely despise about someone I know: I’m never introduced as “Steve”, I am always introduced as “the one I was telling you about.” Never introduce anyone by referring to their medical status, because all you’ve done is marked them as someone to be pitied, and I don’t do pity very well. If I want someone to know that there is a problem with my heart, I will tell them, and I will do it when I am ready.

If you aren’t in one already, you need to find a good support organization. I joined the ACHA – the Adult Congenital Heart Association – in 2006, and before that I was just taking up space. I thought I knew my heart pretty good, but I knew just enough to get myself into trouble. It was through the group that I got educated, I got active, and I got involved.

And you might say that it happened almost by chance. My doctor walked through the front door of the clinic and saw me sitting in the waiting room on the day of my appointment. She stopped long enough to say hi and ask how the family was doing. I stood up to speak with her and when I sat back down, the person sitting next to me asked “You’re a patient of Doctor Book? Have you ever heard of the ACHA?” She gave me a brochure just as my name was called by the nurse and that was the only time I have ever seen that person. But she was there that one time when my doctor came through the front door rather than through the Staff Entrance in the back, which is proof to me that sometimes you are brought into the Kingdom for just that one moment in time.

As you can guess from the name, the ACHA is made up of adults who were born with a heart defect. We’re a nationally recognized Non-Profit organization with about 6000 members. And I can honestly say that I have never met a wet blanket. I’m sure there is someone, but the people I’ve met all have positive outlooks and are charging forward with their lives. And I’m going to let you in on a little secret: Even though I’m one of the older members, these young men and women are not only my friends, they are my heroes. I’m privileged just to be around them.

For years, those of us with heart defects have had to see Pediatric Cardiologists all of our lives. Regular “Adult” Cardiologists aren’t much help to us, because they aren’t trained to deal with Congenital problems. They deal with acquired heart disease: Things like heart attacks, clogged arteries, high cholesterol, and the things that happen to your heart as you grow older. We need an Adult Congenital Heart Defect Cardiologist, and if we can’t find one, we usually go back to our Pediatric Cardiologist. So a lot of us adult CHDers have stories about being the tallest kid in the office, and the looks you get when you walk into the waiting room of a children’s doctor and you don’t have any children in tow. But there are also wonderful moments, like when a Heart Dad asks “So… you just here to pick up a prescription?” and you get to tell him no, I’m the person with the heart problem. And in that moment he realizes for the first time that his child can grow up. That’s an awesome thing!

Learn how to share your story and do so whenever you get the chance. Every time you help someone understand, the path gets a little easier for those behind you. The ACHA gave me the opportunity to get involved, to stand up and speak for others with Heart Defects. I’ve been to Washington to lobby for CHD issues and I’ve been to Baltimore with the ACHA president to speak to the Social Security Commission. I’m here thanks to the nice people of Saving Little Hearts and Mended Little Hearts. And every time I stand up, the thought flashes through my mind that if they ever found out that I was just a country boy from a town of less than 400 people, they’d run me off the stage. As the parent of a Cardiac Kid, you’ve got an important story to tell – don’t let being from a small town or the wrong side of the tracks stop you from telling it.

My friend Amy Verstappen is currently President of the ACHA, but back when she was just Amy, she woke up from surgery to find her Cardiologist staring her in the face. “Amy, you are incredibly lucky. Not many people get to have the heart operation that you just had. That gives you a moral obligation to speak out for all the other people with Defective Hearts out there.”

And that is the thought I want to leave with you: Starting with your Cardiac Kid, you also have a moral obligation to speak for those of us with Heart Defects who can’t speak for ourselves.

It’s your turn to be our Hero.