Children with heart conditions in sports classes at school: Simone

© Silke Bruns

My parents told me that, when I was a baby, I had at least 20 hypoxic seizures a day because of a severe heart defect. The doctors had originally prepared them for the possibility that I would not live to be older than 2 years because of my heart. Then a new, not yet fully developed technology was offered, giving me the opportunity to have open heart surgery. I had the operation when I was 1½ years, and after that my development made a huge leap forward. But the problems started again when I went to nursery school. The teachers there said that I was not suitable for a normal nursery and that I would be better off in a school for children with speech impediments, where they would know how to deal with me. Nevertheless, my parents still managed to keep me at the normal nursery school, but I had to cope with never having any friends because I was always excluded and never really belonged in any group. I only had one real friend, but he was not well either. This really bonded us at the time. The two of us would always sit in the corner on our own, doing our own thing. We are still the best of friends, even today. When I went into first grade in West Germany, he moved back to East Germany. For me, everything started from the beginning again: new kid with a heart defect, special school, etc.

The headmaster was the only person who ever helped me. After the new teacher had spoken to the class for the first time, they all started calling me “handicapped” and no one wanted to be my friend anymore. I was on my own, was bullied, excluded and laughed at, all of which made me a quiet, shy and timid little girl. I never wanted to go to school and was even scared of my classmates! But I managed to get through those 4 years in the hope that things would be different when I went to secondary school. I had good grades and I could have gone to grammar school, but I did not want to because the half of my class who I got on least well with had gone to the two local grammar schools. So instead I went to the secondary modern school, but I was excluded there too. I somehow managed to put up with it though, and ignored the accusations and insults.

I am really grateful to my parents for treating me like a normal child and for bringing me up the way they did, despite everything.

During a routine check up in the university clinic when I was in fifth grade, my doctor asked whether I would be interested in a sports group for children of my own age and with heart defects. After I had a further check up, I said yes straight away!

In the cardiac sports group I benefited from not being laughed at; in fact it was quite the opposite! I finally met children who could understand my problem, and who listened to me. For the first time I had been accepted in a group; I was even a popular choice when we had to pick teams. This experience is normal for a lot of children of my age, but for me it was a dream come true—just belonging, laughing with other children, and having fun! I desperately wanted to have this same atmosphere and situation in my class at school.

However, this was not the case. In sports classes at school we had built an obstacle course with a trampoline, mats for rolling on, benches for balancing on and a vaulting horse. The only thing I had dared to do was jump over the horse and, of course, everyone laughed at me.

But now that I had joined the children’s cardiac sport group, I could prepare myself for the next school class. We had to think of some exercises for the next lesson in the cardiac sport group, and I knew immediately what I really wanted to learn! The other children with heart diseases and the trainer thought it was a great idea and were all convinced that I could do it. My parents came too, to see whether I would be able to conquer my fear. When it was my turn, the trainer showed me how best to jump so that I would not hurt myself. Everyone was really supportive: my parents, the trainer and all the children were cheering me on. This gave me a great feeling of security, and I jumped.

I cannot describe the reactions of my classmates. They all asked where I had learned to do it. I told some of them about the sports group and they thought that it was a good idea. It was the first time that I felt good, standing in front of the class like that with no one laughing at me. From then on, if I was ever afraid to do anything, I would just remember that moment  and could take courage. It was a terrific feeling!

After beginning cardiac sports I completely changed as a person! I felt more free, started talking more not only at home, but also when I visited relatives and to others at my cardiac sports group. I was no longer afraid of being laughed at and was able to express my opinion with no trouble at all. And one of the most important changes for me and my family was that I had overcome my fear.

Simone (name changed for privacy reasons), was born in 1985 with Tetralogy of Fallot. The corrective operation was undertaken when she was 18 months old.

Author: Simone