By the title of this article, you probably clicked this thinking you were about to read some sappy story about how I fell in love and it was like a scene out of a Nicholas Sparks novel and then we broke up and here I am writing about it. Well, not quite. Today I wanted to shed some light on what it is like to have a rare chronic heart condition. Now, I know what you’re thinking; “Jess, your title is very misleading.” It’s actually very accurate. Let’s travel back in time, back to the year of 1999 when I was brought into this world. From what I have gathered from past stories and my mother’s telling, her pregnancy was completely normal with me. No signs of distress or any signs at all that something was wrong. Until I was born. My parents both tell the story of how when I was born, everything was fine and great. Then my dad went home to shower and bring my mom stuff and she called him with these exact words. “You need to come back right now, something is wrong.” About an hour after I was born they diagnosed me with a rare heart condition known as Tetralogy of Fallot which basically meant that my heart, in fact did not know how to be a heart. I had seven holes throughout my heart and my pulmonary valve collapsed. I have what is known as a VSD (ventricular septal defect) which causes a murmur in the way my heart beats. Meaning my heartbeat most likely sounds much different than yours. Last but not least, my right ventricular is way too big. I was born with a broken heart.
If you are wondering how common this condition is, it makes up 7-10% of congenital heart diseases and is only present in every 3.9 per 10,000 live births; so I would say it is pretty rare. In my lifetime I have had five surgeries in total. Two open heart surgeries and three stent replacements. I remember the last time I had to go in for surgery in 2007, I had to go talk to my cardiologist a day or a few days before the actual surgery. When my parents talked, I was 7 at the time. From what I can remember he told my parents about what was going to happen during the surgery and there I was, sandwiched between my parents and my older brother and all I could think about was; I’m going to die. I know how incredibly gruesome that is, trust me but think about it this way. I was 7 years old and someone was literally telling me that there was something wrong with my heart and I needed to have this major surgery to repair it. I was already a very dramatic child so imagine how I acted when I was told this information. Spoiler, I basically didn’t talk at all up until the day of the scheduled surgery which I think was the day after that. I remember my parents trying to get me to talk, or feel better about the situation by taking me to Toys “R” Us and getting me a pair of twin baby dolls. My grandmother and aunt Tammy flew in from Pennsylvania and then little me got a updated big red scar running all the way down my chest.
When I was younger I never thought much about what my condition meant, I just knew that I was not like everyone else. I didn’t always participate in gym class as a child because not only did I milk my condition but basically everyone around me was afraid I’d just die if I broke a sweat. Still to this day I get the occasional, “So like, you can’t run?” I never had a problem with anyone asking questions at all, but sometimes some questions became intrusive curiosity. In the sixth grade a rumor was spread about me; that I had breast implants and that was why I had a huge scar on my chest. When one of my fellow classmates came running down the hall to ask me about this rumor she did not know better and I do not blame her for coming to me and asking. I have to mention that I did not take offense to this, I laughed it off and the way that the girl asked was not malicious, she was just curious. I just thought it was way too funny for it to be real and I informed her that my scar had absolutely nothing to do with my breasts as an 11 or 12 year old. Since I was born, every summer my family takes the hour long ride down to Miami Children’s Hospital, where all my surgeries and my cardiologist are located for my yearly check up, which includes but is not limited to an electrocardiogram, a EKG, a chest X-RAY, sometimes a CAT scan or a stress test and almost always includes vials of blood to be drawn. After the tests that the doctor ordered are done, my family and I go to talk to my cardiologist to see where I stand; do I need more surgeries, is anything new or different? It is all discussed like a meeting. We usually get there around 7pm and leave around 12 to 3pm and then the hour long drive home. With my last appointment my doctor told us that next year I might need a pulmonary valve replacement. I am not on any medications whatsoever and I do not have any treatments that I have to undergo. I just have a heart that doesn’t know how to be a heart. With writing this I am not looking for pity or anyone to feel bad for me, I wrote this to inform people about something that is so unknown, that I have to live with.
For more information please visit:
The Mayo Clinic Staff, Feb. 23, 2012
Edited by: Ian North