I was sitting in my pediatric cardiologist’s office – trying to fit into one of those little chairs – when the man sitting next to me said “So… I guess you’re just here to pick up a prescription for your child?” Without really thinking about it I said “No, I’m the patient; just waiting for my appointment.” And I literally saw his face change as all his dreams about his child were reborn.

(from Adventures of a Funky Heart! blog) 

Mark Steven (Steve) Catoe, a 1988 graduate of Charleston Southern University and the author of Adventures of a Funky Heart!, is an advocate for people of all ages living with a heart defect. He speaks to heart families at conferences around the country and has lobbied for new congenital cardiac care legislation in Washington, D.C.

Catoe’s blog offers practical, technical advice and even provides a printable drug chart to make life easier for heart patients and encourages patients to learn the anatomy of a normal heart. But the most important thing his blog offers is the gift of hope.

Catoe is living proof that children with congenital heart defects (CHD) can grow up. Congenital heart defects are the most common birth defect. Catoe’s defect, tricuspid atresia, however, is rare, with just 1 in 10,000 born with it.

When Catoe began his blog, he didn’t anticipate reaching so many parents of children with CHD, but he quickly developed a following. Catoe finds it disturbing that congenital heart surgery has existed since 1944, but no one has written a guide describing what to expect. “Perhaps the problem is the technology moves too fast,” he said. “But, I know my parents had almost no guidance, and at times they felt like they were in a dark room trying to find a light switch; there just wasn’t that much known about the heart,” said Catoe.

Heart Moms and Heart Dads, parents of children with CHD, write to Catoe almost daily asking questions about what to expect and looking for more information. Catoe is happy to help. Perhaps his caring, practical attitude was inherited from his own Heart Mom and Heart Dad. Catoe said, “Thankfully, my parents didn’t turn into ‘helicopter parents’ and hover over me all the time. They took the attitude that a doctor took – he wasn’t sure exactly what my limits were, but when I did too much, I’d stop and rest. So other than common sense guidelines, stay off of the climbing tower at the elementary school, for example – they trusted me. And if I tried to use my heart as an excuse to be lazy, I got an earful.”

Catoe’s blog is popular with parents because most of them are desperate for answers. “I think it really hit me the first time I stood up to speak at a conference,” he said. “The audience was all adults; the children were off having fun. I looked up and immediately noticed that these people were young – everybody was in their 20s and 30s. I thought about the fact that the people have probably never even met an adult living with a heart defect before, so I abandoned my notes and just told my story. I couldn’t have been very articulate, but I hope my unspoken message got through: ‘You can get through this. Your child can have a happy, useful life.’”

Most of Catoe’s time at Baptist College (now CSU) was spent as a normal college student. He chose the school because its small size would allow him to get around easily. “I was like a lot of students; it took some time to get my feet on the ground, but I was able to find my path,” remembers Catoe. “I’ve been tossed in the reflecting pool on my birthday, just like almost everyone else. I kept statistics for the football team, and I’ve been in all night study sessions. I fell in love with history in Dr. Sheila Davis’ class, and I was fortunate enough to meet a lot of great people – faculty and students alike.”

Catoe’s only regret about his college years was that “perhaps I was too healthy. My heart didn’t bother me that often, and I took one pill a day. Because I wasn’t thinking very much about my health problems, I think I missed a golden opportunity to educate people about growing up with a heart defect – not only at CSU but at the hospital across the street,” he said.

Today, Catoe may be considered disabled, but that hasn’t stopped him from providing information and offering hope. “I had my third heart surgery less than a week after I graduated in 1988. I had scar tissue all over my heart from my two previous operations – the surgeon anticipated that,” he said. “But no one knew how much scar tissue there was, or that it would tear when they opened my sternum (breastbone). I needed 20 units of blood, and I came very close to passing away on the operating room table. I’m still pretty healthy, but in the time since that surgery I’ve had a mild stroke, congestive heart failure, and I have a pacemaker.

“There are a lot of physical things that I can’t do, but I can write, and I can tell my story – and the stories of all of us who are battling a heart defect. There are about two million people in the U.S. living with a congenital heart defect. But because this is an invisible disability, too often parents of a sick child have no idea what a heart defect is until they are confronted with it. So, if I can give you the information that you need – in little chunks so that you don’t feel overwhelmed – maybe you’ll see that you aren’t in this fight alone.”

Catoe sums up his message this way: “On average one child out of every 125 born will have a congenital heart defect,” he said. “Most will require some type of intervention, be it surgery or a catheterization. Some of them will require multiple surgeries. But heart defects are survivable – 90 percent of all children who have open heart surgery become adults. Never lose hope, and never give up.

“Because every heart deserves to live a lifetime.”

To follow Catoe’s blog, log onto http://tricuspid.wordpress.com.