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Nicole

Situs Inversus, Dextrocardia, PS, Pacemaker (x3), CCTGV; B-T Shunt, Corrected ASD and VSD, B-T shunt removed


When I was born on October 26, 1976, I was lucky to have a pediatrician with a very good ear. Dr. Max Mintz recognized right away that there was something not quite right. He recommended that I be seen by a cardiologist. Dr. Edward Massin came in and only three days after birth, through a catheterization, it was confirmed that I had complex congenital heart defects. Among those discovered were situs inversus totalus (all organs on the opposite side of "normal"), dextrocardia, pulmonic stenosis, an ASD and "huge" VSD, and CCTGV (congenitally corrected transposition of the great vessels). Needless to say, my parents worried about me.

However, I did quite well for a number of years. Yes, I was a quieter baby and was not as active, along with having clubbed fingers and being quite small, but overall I was doing quite well until the age of five. That is when I began to turn blue from lack of oxygen. That year I had a Blalock-Taussig shunt to increase blood flow to my lungs. For a few years that was all I seemed to need until I started to complain of a tummy ache at age seven and once again Dr. Mintz's good ear caught something else. My heart was skipping beats. My heart of course would not misbehave for Dr. Massin, but he believed Dr. Mintz and put me on Lanoxin. However, that did not seem to be enough. Later that year I ended up having a dual-chambered pacemaker implanted by Dr. Cooley.

Things went very well for years afterward. The pacemaker had to be replaced when I was 13, but for the most part I was pretty healthy, considering. However, even little colds turned into bronchitis, and I was unable to participate in P.E. at school. This meant I spent a lot of time in the library, or at home, reading. Reading became my adventures. I still love to read and have a very hard time putting any book down. I remained small and skinny but at least seemed to have grown taller along with my peers.

It was not until I went away to college that I began having more problems with my heart. Maybe it was all that walking around campus, I don't know. Anyway, in 1997 I ended up having three surgeries, a catheterization, and an angiogram. The first surgery, a pacemaker replacement, was expected. It was done as an outpatient surgery in the cath lab, and I healed very nicely. Five months later I ended up in the emergency room to have my gall bladder removed shortly after discovering I was having problems with atrial flutter. They had no idea what could have caused my gall bladder to become so swollen and were worried there might have been a blood clot that could possibly be still floating around inside me, so they did an angiogram and came up with nothing. We still don't know the physical reason why my gall bladder went haywire. We do, however, know God's reason. On that trip to the ER, I met Dr. Edgar Newfeld, a wonderful pediatric cardiologist who suggested that repair WAS possible for me, and at a much smaller risk than we had been told years before.

Three months later Dr. Newfeld performed a catheterization to determine my eligibility for a correction, and the results were positive. So three weeks later I went into surgery for 8 hours and came back more pink than I had EVER been. The surgery was a great success. Dr. Nikaido, the surgeon, had patched the "huge" VSD with a Dacron patch, and the ASD with part of my pericardial sack, took down my shunt, and opened my PS as much as he could. 

The results have been wonderful. I've been able to do so much more since my surgery, and I thank God for my "faulty" gall bladder that led me to Dr. Newfeld. Although he is no longer my cardiologist, I will be grateful to him always.

I was able to finish college with a Theatre major, and earn a teaching certificate. I now teach middle school theatre arts and love it (most of the time). Though I still have occasional problems with my heart's rhythm, I am doing quite well. I will be getting married June 16th to a wonderful man who has accepted me with all my defects and loves me just the way I am. Who could ask for more?

? Nicole (Texas)  


This article was last updated on May 5, 2001

  • Born:  October 26, 1976
  • Diagnosis:  Situs inversus, dextrocardia, pulmonary stenosis, ASD and VSD, CCTGV
  • Treatment:  B-T Shunt, pacemaker, corrections (ASD and VSD patched, B-T shunt removed)


 

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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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