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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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Author: Created: 11/19/2012 1:22 PM


We know that you have a lot to say about living with congenital heart disease. To share your story (in 500 words or less) with other members of the ACHA community, click here. Thank you in advance!
By CaptainCardio on 12/5/2012 12:36 PM

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.

By CaptainCardio on 12/3/2012 1:21 PM

To give you a little history about me: Until 8th grade I thought I was a totally normal kid, played sports etc. but I needed a physical for an allstar football team I was selected for, and we discovered that I was born with PDA (Patent Ductus Arteriosus) - this is a little valve that closes when you take your first breath as a newborn. My PDA never closed and mixed blue and red blood in my heart.

I also had a Bicuspid Aortic Valve (2 leaflets instead of 3), which started leaking and in turn enlarged my Left Ventricle. This combination was diagnosed and I was sent to CHOP in 1989ish?

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