Heart ambassadors

"I only learned to experience the world later."

Raúl, educator, 31 years old. © Nationales Register | privat


Two days after I was born, I turned blue. The doctors diagnosed a severe heart defect, a so-called TGA. I was immediately airlifted to a heart center.

The operation went well. In my first months of life, I could only explore the world around me from my crib with my eyes. That's why later I had to touch it with my hands as well. I received therapy that helped me a lot. My parents documented my progress on film back then. Even today, I am amazed by my development! And I still look at things very closely with my eyes. Maybe that has something to do with this experience.

As a child, I never felt different from the other children.

I have a big scar on my chest from the surgery. Although as a child, I had to go for yearly checkups, I never felt different from the other kids. My doctor said that I wasn't as capable as others my age, but I never perceived it that way myself.

It gives me the strength to live each day with full energy.

Sometime during puberty, the scar started to bother me. It is quite large and makes the chest somewhat funnel-shaped. Now, I no longer have a problem with it. I have learned to live with my scar. I am a fun-loving person and do not feel affected in any way. If anything, the scar reminds me today how short life could have been for me. It also gives me the strength to live and enjoy each day with full energy.

I still have a lot of plans.

After my vocational training, I decided to study. I caught up on my high school diploma and just wrote my bachelor's thesis in education, in Denmark. Last year we, my girlfriend and I, moved to the countryside. In May we got married. My health is fine. And we still have a lot of plans.

We're kind of pioneers.

It's important to me to make my data available for research so that congenital heart defects can be detected even faster and treated better in the future. Who knows today exactly what it's like to grow old with a congenital heart defect? That still needs to be closely observed and found out. After all, we are something like pioneers.

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