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Sarah

Truncus Arteriosus type 1 and VSD


I was born the first of twins. At about three days old, the doctors told my mom that I may have a heart defect, but they would have to more tests to be sure. Sure enough, they figured out that I had truncus. At that time, the doctors told my mom that it was very rare and they wanted to wait until I was at least 20 pounds to do the first operation.

I didn't reach 20 pounds until I was two years old. Then at age four, I had my second operation because I had outgrown the pig's valve the doctors put in. Another surgery was done at age seven for the same thing. It's been 13 years since my last open heart surgery and I'm doing well other than the fact that I'm out of shape. Other than the scar on my chest, you would never be able to tell that I had a heart problem. I participated in physical education and did the "Jump Rope for Heart" whenever they had it at my school (in elementary school). I didn't have many limitations when I was younger. When I was ten years old, I had to have my gallbladder removed due to gallstones. I was told that many heart kids have similar problems with organs like that.

Once I got into the sixth grade, that was a different story. I started hanging out with the wrong people and did some really stupid things (at least stupid things due to the heart problem.) I started smoking and did the other teenage things. I even gave myself a tattoo, and two months later I was in the hospital for blood poisoning. The day after I got out the hospital for the blood poisoning, I was back in the ER because I had the worst headache. A CAT Scan was done, and three abscesses were found in my brain. That was due to endocarditis and it going into my brain. The abscesses were drained and I had to be on IV antibiotics for six weeks after I got home. So needless to say, I had a central line in my chest for the antibiotics.

In December of 1997, I found out I was pregnant. It only lasted for two months because I had a miscarriage. Then in June or July of 1998, I found out I was pregnant again. I was so happy when I went past two months and my doctor told me that this one was a "keeper." My dream had come true. This was what I wanted so badly, because I was told that due to my heart problem, I may not be able to have children. There was a risk involved, me and the baby had a 50/50 chance of survival. In Nov. of 1998, I went into my first episode of ventricular tachycardia and went to the emergency room. My heart had to be shocked back into rhythm. I kept telling everyone, "just save my baby". "How's my baby?" "Do you hear a heartbeat?" I then was told that my son still had a heartbeat. So, I was happy. I had a doctors appointment on Dec. 17, 1998, and they did a sonogram. I could see from the doctors face that there was something wrong. So, I asked him, "Do you see a heartbeat?" He looked for a minute, then said no. I was so devastated. They had to induce me and the next day, I had the most precious little baby boy.

In September of 1999, I went into another episode of ventricular tachycardia and went to the hospital again. My heart was shocked back into rhythm. That's when the doctors asked me if I wanted them to put an Automatic Implantable Cardiac Defibulator in my chest to control the VT. I agreed to it, and that's where I am today. Doing fine, and just going from day to day. I've been through a lot, but not as much as some of the children that I've read about. I wish everyone the best of luck. Thanks for reading.

Sarah (adult with CHD, in Louisiana)


This article was last updated on January 23, 2002

  • Born:  October 29, 1981
  • Diagnosis:  Truncus Arteriosus (TA), VSD, Pulmonary Hypertension and enlarged right side of the heart.
  • Treatment:  Three open heart surgeries to repair the truncus. Pig's valve (first two surgeries) and now I have a conduit. Also had to patch up the VSD. On Digitek (digoxin), Zestril, and Betapace (sotolal).


 

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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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