This is the text of my presentation to the Broken Hearts of the Big Bend Regional Conference on Congenital Heart Defects. (February 13, 2010, Tallahassee, Florida)
My name is Steve Catoe, and I was born in 1966 with a Congenital Heart Defect known as Tricuspid Atresia. If you are not familiar with that defect, Tricuspid Atresia means that my Tricuspid Valve – which is the door connecting the Right Atrium to the Right Ventricle – does not exist. Because of it, my Right Ventricle is very small and almost cut off from the rest of the heart.
I write a blog named “Adventures of a Funky Heart!”, where I write about growing up with a heart defect, the latest in Congenital Heart research, and news about advances in the field. I try to make it interesting and use a little humor, so hopefully you’ll keep coming back and reading every day. Hopefully I can help you by giving you information about heart defects that you can use – and I try to do it a little bit at a time, so you don’t feel like you are trying to drink directly from a fire hose.
Usually when I get a chance to speak to a group I talk about spreading awareness and I talk about our Cardiac Kids and I talk about adults living with a heart defect, who I call Heart Warriors. I’m scheduled to be on the Adult Survivors Panel too, and I plan to be around for the rest of the day, so if you want to talk to me about anything I’ll be here. But I asked for a little bit of extra time to tell you a story.
I was born on a Tuesday, and on Friday, they started to realize that something wasn’t right. I don’t know if my mother noticed it first, but that was probably the way it happened. Moms know their babies, and they are almost always the first one to pick up on any problem.
So they took me to my pediatrician, who figured out that I had some type of heart problem, but he wasn’t sure what. So he sent me to the nearest hospital that could help me.
The doctors there told my parents that I had Tricuspid Atresia, and they should take me home and love me, because I wouldn’t be here that long. Well my parents didn’t think a whole lot of that statement, and neither did my doctor back home. In fact, he said it was completely unacceptable.
So he found four places that could try a surgical repair: Johns Hopkins, Mayo Clinic, the University of Virginia, and the Texas Heart Institute. Mayo and Texas he threw out because of the travel distance. Virginia, which was his own medical school, he eliminated because he didn’t think they had enough experience. That left us with Johns Hopkins. He called, and things were set up for that summer. My parents would take me to Baltimore, I would be evaluated, and if possible, the Hopkins surgeons would attempt the surgery.
That night all hell broke loose. I went into heart failure, my heart rate shot up to 200 beats per minute, and I was rushed to my local hospital. I was there a week while they tried to get me stabilized; in the meantime, my pediatrician was working the phones, relaying information about me to the Hopkins doctors. They were telling him that I needed to get there as soon as possible.
Dad picked me up at the hospital and drove home to pick up momma, and we immediately left for Baltimore. Remember this occurred in 1967; I-95 hadn’t been completed yet. After driving all day they needed a break, so they stopped at a hotel in Petersburg, Virginia.
They had been asleep about an hour when Momma got up to check on me. She happened to glance out the window and it was snowing as hard as she had ever seen it snow. She woke daddy up, and we were back in the car and moving within a few minutes.
Cars were stuck in the snow all along the roadway, and daddy was stopping every fifteen minutes to wipe the windshield off with an old rag. When they passed through Washington he actually thought about putting me and momma on a train to Baltimore and catching up to us later. It’s a good thing he didn’t, because he found out later that the snow was so bad that the railroad shut down their trains for the night.
Three families were expected by the Children’s Medical Center that day, but we were the only ones who made it. The doctors examined me and then asked my parents for permission to do a Catherization. After the Catherization, the head Cardiologist came out to talk to my parents.
“He is down to hours,” he said. “We need to operate right now.” He added that my odds of surviving the operation were 50-50 but without it I had no chance. My parents had about five minutes to discuss it before they had to decide to risk the surgery or just let me slip away.
I was taken into the operating room at 10:30 that night, and the operation ended about three in the morning. My folks didn’t leave the hospital until they saw me afterwards, so it was almost daybreak when they went to a boardinghouse about a block away.
I have to admit that I begged Karen and the organizing committee for a few moments to speak to you today, almost to the point of embarrassing myself. Because that surgery took place on the night of February 17, 1967 – almost 43 years ago. My parents are just ordinary people; but that night they turned into a Heart Mom and a Heart Dad just like you. And I’m here today because they have always been willing to ask one more question, explore one more option, and go one more mile.
So I wanted to take a few moments and tell you my story, encourage you to hang in there no matter what, and on behalf of all the Cardiac Kids and Heart Warriors, to just say Thank You.