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

Anna-Lena's story

Anna-Lena`s story and the experiences of her parents with the non-medical support during the days on the cardiological ward for children 18b west of the university pediatric clinic Münster.

Anna-Lena was born on the 12th of September 2001 as a healthy and fit kid. She has a big brother – Florian (5 years). The pregnancy was not always nice – there was a lot of fear to lose my unborn child. That’s why I started to be in labour already in the 17th week and from that time on I had to lie down. They told me that I had almost no chance to keep the calculated day of birth and it seamed that Anna-Lena started to be one’s one man at that time already. She came 4 days to late.
Her growth during the first year was almost perfect. Just that she was a little big more often sick than other kids. After the first year she started to visit the nursery school. This was when they realized that she was quickly tired and exhausted. After a couple of days we decided and it should be enough if she visits the nursery school just 4 out of 5 days a week and to carry her most of the time in her buggy. This was o.k. for a while. But she started to be more frequently sick and she degraded in her physical capabilities.

The paediatrics was not able to why. But then we had the U/ just briefly before her second birthday. This was when they diagnosed heart murmurs. Given this information the paediatrics told us to stay calm and to visit a heart specialist. We had an appointment with Dr. Allgeier 3 weeks later.

Just to be on the safe side I decided to get a second opinion. My family doctor did not hear any heart murmurs at all. This was what I would like to hear but it also puzzled me even more. I showed up at our neighbour (also a doctor) and she confirmed the heart murmurs.

Anna-Lena Dr. Allgeier diagnosed ASD2 whit a size of 9mm. He calmed us down and told us it would be possible to close it with a heart catheter by inserting a shield. But this would be enough by the end of the 4th year because she seamed to be fit at this time. There was no need of medicaments and we where happy that it doesn’t seamed to be that serious. We should come back six months later and we were told that we had a good chance that the hole would close during this time by himself.
But nothing happened. The hole did not close himself but the chance was still there. We should wait some more months and come back another six months later. This waiting cost our nerves. In the mean time Anna-Lena continued to degrade n here physical capabilities. When doing sports she had to retire after a short time. She was taking her breaks just the way she needed them. It was amazing to se how good she was able to control her body. That’s why we only had one time the problem that she was “blue” in the kindergarten.

Then we had the next check-up. But this time we got as a result that we shall not wait with the operation much longer because the hole still refused to close by himself and was growing together with her heat. They send us home and told us to decide for a clinic. We went to the University clinic in Münster because I was born in this region.
On the 18th of October 2005 we went to the clinic. In the beginning everything was o.k. until the first ultrasonic testing. It was devastating. We where told, that the hole was positioned at a very unfavourable spot and that the standard operation with the shield was by 90% not possible. Another doctor confirmed the diagnosis. The next day they found out that an operation was mandatory since the hole was widening even more since the surrounding tissue was to week. Anna-Lena

Anna-Lena We where send home for two days and shall come back on next Monday, this was when the operation was about to take place. It was a relaxing weekend and we where just doing what the kids wanted to do since nobody knew what was about to come. In the beginning Anna-Lena was very disappointed about the delay of the operation over the weekend since she was happy that she will get better soon after the operation and she was looking forward to play with her friends again.
Next Monday we had again delays since the child ward as full. Anna-Lena was waiting for hours just to be send home again.
Another 3 weeks later – a Wednesday. Also this appointment was rescheduled from an earlier date. Anna-Lena was sent to the OP at 10 a.m. Beside the Dornicum we could se the fear in here eyes when it was time to say good by. I was never feeling that bad in my life. After 9 long hours (which we spend in the city not to think about here) we where allowed to se here again.

I was lucky (my man was busy at this time) that I was participating in an information event from the Card-AG by Mr. Reiske about the heart operation. It was a good idea to participate because otherwise I would have had problems when seeing Anna-Lea again. It is so terrible to see your child connected to all this machines.
The sound of the artificial respiration was horror. On almost all the time something was beeping. It was most difficult for us to see how she was fighting against the artificial respiration when waking up. I will never forget that sound again. It sounds and looks like your child will suffocate in front of your eyes.
Anna-Lena recovered quickly. No problems any more with the artificial respiration. Just a blood transfusion was necessary in order to fill the heart-lung machine. She was extubiert on the same evening and was send to the normal child ward on the next day at 12 a.m.

Anna-Lena Just two days later she was standing on her own feed again. And another day later she was running to the play room. She was happy to show us how good she was able to play with her new heart.
Of course there where throwbacks. For days she let nobody to get close to hear just because she feared that somebody would hurt her again. That takes time. She was send home 11 days after the operation!!!
Her fear about doctors stayed for a couple of weeks but we are doing better every time. Also she had problems to sleep in her own room but also this we will learn again. She was afraid to be alone. Since the beginning of January she is visiting the kindergarten again and it is just now we are realizing what whirlwind she is. It is like she would like to catch up the first years within a couple of weeks. Physically and mentally she is totally fit. Anna-Lena is very proud about how brave she was and is showing her scares which where influencing her life so positively.