Card-AG - The Cardiologycal Working Group of the University Pediatric Clinic Münster

Leonie‘s story

Parents report

I was born on 18/07/96 by Caesarean section in the Marienhospital Borghorst, although my Mom and I still wanted to spend a little time “with each other“. Neither of us was in a hurry. On the contrary, when it was said that I would come on 07/07/96, my mother and I did not believe it. We did not want to be separated from each other.

However: I had to come, whether I wanted or not. Mom was anaesthetized for the OP and did not quite realize what was happening. After a while she addressed: Mrs. Overmann, get awake, you have a small healthy daughter. How glad and proud Mom was, Daddy too! He than bathed me and held me in the arm till Mom arrived. But she was still far too tired to hold me tight for a long time therefore Daddy took me to bed.

The next day everything was still all right. At least until Dr. Schulze Everding of the children intensive ward of the university clinic had been with me. She diagnosed interferences of the heart. However, she did not to worry Mom and Daddy and said that something like that does not necessarily have to mean something bad. At noon, Daddy went to Münster with me by cab where Dr. Kotthoff examined me and diagnosed a serious, very rare cardiac defect (Truncus arteriosus communis type I). Hey, we had never heard of it before. Could it really be that so small a person like me can already be so ill?

Mom and Daddy could not believe it. Everything had gone so well during all the months of the pregnancy. But it was true.

Much was spoken. How bad my cardiac defect really was, which chances I had, how my life would be, etc. We received honest answers: My cardiac defect was very rare as were the experiences with it during the operations. The chances: Firstly, I would have to make it through the operation itself and then my chances were 50:50 for the first year! We were shocked. It was so incomprehensible. We had imagined it all to be completely different.

Mom and Daddy then thought that in would bi good to have me emergency baptized before my first heart catheter examination. The baptizing celebration was very beautiful but nobody really wanted to celebrate. The day after, the catheter examination took place. I came through everything quite well, the first result was confirmed, but we still had to wait because I was about to get a transplantation (cardiac valve with part of the lungs). And the transplant had to come from another child. This was the next heavy shock for Mom and Daddy. They worried about me and knew there would be parents just like them, whose child would have to die and they would have to donate the organs and therefore give me a chance to survive. It was very hard.

The operation took place on 13/08/96. 3 ½ weeks in the childrens ward 18 B of the university clinic Münster were over. Mom and Daddy took me downstairs to the OP at 8.30 a.m. The day passed, nothing new from me till 9.30 p.m. Then I was placed on the intensive care unit 19 B. Dr. Weyand had had to stabilize my thorax by adjusting a holding device on both sides of it, because otherwise my heart would not have had enough space. This had never been done before. But considering the circumstances, I had come through everything quite good. My thorax was still open, but this surely would change within the next days.

Unfortunately it did not. The transplant and the inside organs had swollen up so immensely, that it took 7 ½ weeks till my thorax was finally closed again. During that time the doctors had again and again tried to lock my thorax. They finally succeeded on 04/10/96: My thorax was closed. I had various difficulties in coping with the consequences (infections again and again, Ductus, cardiac arrest and heavy problems with the circulation and the breathing). The extubation was tried (I should finally breathe alone). But it did not work out. And my great-grandfather could not wait for me any longer. He died with the last wish that I should survive and that he may die for me. His wish has been fulfilled. However, I would have enjoyed meeting him.

A successful trachea cut was finally made on 03/12/96: I began to breathe on my own again on Christmas Day. This was a gigantic success. I was allowed to go home at the end of January 1997! Daddy, Mom, grandmas, grandpas and primarily Unkas (our dog) and of course I were incredibly happy. We could meet finally after 6 ½ month! Unfortunately, Unkas was already so ill that he died two weeks later. This was unfair. We had understood each other so well and we had been pleased that everything was good now!?

Some stays in the clinic followed, just because of my trachea cut which had to remain till August 1998. It was then closed. Just about one year later I got a PEG probe instead of my diet probe. (The PEG probe is slid by the abdominal wall into the stomach.) This is much better than before. Nobody can see anymore that I am ill. I get more self-confident.

We went to the rehabilitation in between. This was quite funny, we have met many nice people.

Since December 2000, I have attended the nursery school “morning star“. This is an educational nursery school specialized in taking care of ill children. It has only small groups (up to 8 children). I like it incredibly there. I can hardly wait for my cab to pick me up in the morning. At noon, I look forwards to seeing Mom and Daddy, however. Then we go for a walk with "Sam", our new dog, or play in the sandpit. Of course, this is a lot of fun.

In September 2001 I suddenly had to go to the hospital again. At a long time ECG the doctors had noticed that I pause for almost 3 seconds between two heartbeats. This in very much; too much. The doctors as well as Mom and Daddy decided that I had to get a cardiac pacemaker. I had no problems with the operation as well as with the heard catheter examination one week later at which a narrowing was stretched by a balloon. Two days later, I was already at home again.

All in all I have come through the hard time well, even it I have problems growing and gaiing weight. My intellectual development also is behind my real age but I still learn. Most of all the things I enjoy.

Of course, I hope that the next operation some time in the next years will go as well as before and that I can spend a lot of time with Mom and Dad. Both of them are absolutely sure: It is good as it is, the main thing is that I have made it so far and that I may stay with them! Even if the whole situation is not always so simple in the family. So, this is for today, but I will surely write to you again, and I and Mom and Daddy wish you all best.

CU - Leonie Overmann.