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Jason

TGA, Mustard Procedure


I was born in the second biggest city in Michigan in 1970. I was the last child of 7. My mother was 42 years old at the time of my birth, which I have been told is probably a contributing factor to my CHD. During the pregnancy, my mother had no idea that any problems existed. Once I was born, however, it was immediately apparent that I was a blue baby. My mother tells me she was shocked when I opened my mouth to cry and revealed a black tongue.

Despite my early problems I have been quite healthy. And to be honest, some of my medical history has been lost through the many moves I made in my early twenties. I know, however, that something was done very early in my infancy that allowed me to grow stronger until the age of two when I had the Mustard Procedure. My parents needed to take me to Chicago to find a doctor who was performing the procedure with an acceptable success rate. My mother tells me that I had an extraordinary ability to listen and understand the injections, catheterizations, operations, etc. that were performed on me. She said that even before I was able to verbalize, I would nod in agreement with her explanations and give my consent to any procedure without tears. (Now that I am thirty, I can no longer claim such medical bravery. I tremble and shake on the gurney before a battery change on my pacemaker).

When I was fifteen, I began to have trouble with my rhythms. This was a very scary time for me. The palpitations were so frightening that I often (mistakenly) thought that I would not make it through the night. A pacemaker and medications were finally able to control this problem and I no longer awaken in the night with a racing heart.

Over all, my childhood was pretty normal. I loved swimming, fishing, bike riding and water skiing. I could do almost anything other kids could-just far less of it. As an example of this, I remember one friend who was "resting" with me during a bike ride said, "I get tired, too. It's just that I take a two-minute break and I'm not tired anymore. You take longer".

Growing up, I always had the fear that I was making too big a deal of my heart condition. I look very healthy and as long as I don't have to climb stairs or run you would never know I have CHD. The instructions from my cardiologist were to play until I got tired and then to rest. It's hard to determine exactly what tired means. I think sometimes I did less than I was capable of and sometimes I over did it. No one wants to be the sickly kid or make every one else wait for you so sometimes I would push it and then feel like sick afterward.

When I was a child my scar was very prominent. Because we spent our summers by a lake, I ran around without a shirt on most of the time. It was the seventies and casual clothing for me meant a pair of Levis' cut-offs. Shirts and shoes were optional. As a kid of seven or eight, it didn't faze me at all to expose my scar to whoever happened to see me. In fact, I felt oddly proud of my scar. It made me very unique and I remember proudly giving some very cavalier explanations of TGA that involved something about a "backwards" heart. In my mind, having heart surgery made me brave, tough, fascinating and adorable all at once. I must have been quite a sight, because I remember giving my fascinating (to me only, probably) history to several people.

Doctors are always impressed that I have "grown" so well. However, I'm not sure that my CHD didn't stunt my growth. At 6 feet tall, I am a full 2 inches shorter than any other male in my family. And while I wear size 12 shoes, all my brothers wear 15 or larger. I also had a lot of orthodontics as a kid. The dentist claimed that was due to stunted growth. I don't know if that is true or not.

Today I am 32 years old. I have a gorgeous wife and three girls. I go to college full-time. I recently left a job as a supervisor of gang and drug prevention non-profit because it was too stressful. I really want to take care of my self and see as much of my daughters as God and my ticker will allow. My last pacer check was a few days ago and everything looks good. I am very grateful to have been born in a time and a place where so much medical care was available.

— Jason in Arizona

P.S. I have enjoyed receiving three emails from others who have undergone the Mustard procedure. Please feel contact me through C.H.I.N. if you or a loved one have had this procedure. I don't have any special knowledge about CHD, but it's nice to know I am not alone in having TGA corrected by the Mustard Procedure.


This article was last updated on June 12, 2003

  • Born:  September 2, 1970
  • Diagnosis:  Transposition of the Great Arteries (TGA)
  • Treatment:  Mustard Procedure


 

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Disclaimer: Our members' stories represent their own perception of their experiences, and the medical information contained within has not been reviewed for accuracy prior to publication. Stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.
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