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By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

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Dec 5

Posted by: CaptainCardio
12/5/2012 12:36 PM  RssIcon

I was born in the city of Uberlandia, state of Minas Gerais, Brazil on March 26, 1980. I was born with 5 congenital heart defects: my right ventricle is atrophic, I do not have the tricuspid valve, I have pulmonary stenosis, inter-atrial septal defect, inter-ventricular septal defect, and the mitral valve was over working. In other words, my right ventricle did not work properly at all. The doctors considered me a blue baby.

My first 5 months of life was very hard. I had all kind of sickness possible, colds, flu, and almost every day my pulmonary valve would close and I was in crisis with short of breath. My mom would try every possible way to help me but all in vain. My mom, at that time did not know the extension of my health problems.

I was 5 months old and me and my mom took a plane to Belo Horizonte, a big city to have better assistance. I had my first surgery. They took my vein from my arm and connected it directly to my lungs. With this surgery my lungs would always have enough blood and I would have enough oxygen for my body. I started to develop, I was not sick all the time and with 13 months old I started to walk.

About 2 years later things started to be bad again, slowly I was limited again, and when I was 5 years old I could hardly walk. My mom and my Dad had to carry me all the time.

My pediatric cardiologist advised us that it was the time for an open heart surgery and she suggested a very good doctor in the city of Sao Paulo. I didn’t understand what was going on, but the comfort and love of my parents made me realize that everything was going to be fine.

January, 1985 I had my open heart surgery. The doctor said he could not fix my heart because it needs too much prosthesis. He fixed the blood circulation. The hole inter-atrial and inter-ventricular was closed; a pulmonary vein was connected to my lungs without a valve. It was a success. Immediately my body color changed, no more murmur sound in my heart and after 15 days in Sao Paulo I went back home. I could walk, I could run. My mom made a beautiful blue dress and we went to our church to thank God for this great blessing.

Growing up was not easy, especially because I had limitations. I did some swimming classes, and almost drowned at the pool. I did participate on gym classes at school. I was always treated as a normal girl but I was always aware of my limitations.

I currently have two high risk conditions, Tricuspid atresia and single ventricle. Despite all I have gone through I still manage to live a normal life. I am 31 years old. I was married at 29 and still planning to live a normal life.

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