My Story


Sorry for any mistakes - I am still a young man and my english is not very good.

My name is Marian. I was born on the 26.08.1996 in the 39'th week of pregnancy at the university hospital for children in Münster (Germany). Weight 3050 Gram, length 49 cm and head circumference 34 cm. The doctors diagnosed, after my birth, a heart tumor, a so called Rhabdomyome.

My mother gave birth without any problems and in the beginning everything was o.k. In the first hours I was in the cardiological ward for children's at the university hospital ( But soon things became worst. I was in a bad way. I needed oxygen and an ultrasonic scan of my heart showed intracardiale tumors and a clear aortenbogenhypoplasie. On the second day of my life my breathing rate rose above 80 / min. and for a short period I was in the intensive care ward for children's, and was given oxygen. I got a catheter in my navel vein and with help from the Prostaglandin they opened the Ductus Arteriosus Botalli.

Some time later I was feeling much better and they sent me back to the cardiological ward for children's. They treated an infection on the 01.09.96 with Antibiotika for 10 days. My oxygen saturation became better and on the 09.09.96 they could stop the Prostaglandin therapy. Soon after my release, on the 23.09.96 the doctors for the first time spoke of Tuberous Sclerosis linked to my heart tumor.

I was for the first time at home and this was when my mom first noticed the strange twitches in my arms, legs and some times my eyes. At the beginning she thought nothing of it, but kept an eye on it.

I was sent again to the hospital on the 09.10.96. A checkup of my heart was done to see how sick I really was. During a routine Echokardiographie on the 10.10.96 I again had twitches and the doctors, for the first time spoke of spasm.

It was clear from the check up, that i needed an heart operation. Beside the known aortenbogenhypoplasie they also diagnosed an aortenisthmusstenose and high pressure in the lungs - a so called pulmonale hypertension. A very urgent operation was planed for the 21.10.96. I was not feeling so bad accept for a little accelerate breathing. I enjoyed my milk and put on weight and on the 20.10.96 I was smiling for the first time.

A computertomographie and magnetresonanztomographie confirmed the diagnosis of Tuberose Scleroses. A shock for my family. The doctors made a so called Wood Light diagnosis on my knees and shanks and found areas of depigmentation - so called white spots. From the 13.10.96 I was given Sabril Antikonvulsiv. This was the beginning of a long road to my cure.

My first heart operation end very well. They removed the constriction of the aorta by an end to end anastomoses and they made a plastic patch expansion. I was extubiert after only 4 days and on the 25.10.96 they moved me from intensive care to the cardiological ward for children's. My bloodpreasure was still very high and I was given some medicine to normalize it. I got a temperature on the 08.11.96 due to a bad infection and was given antibiotika.

The EEG showed a clear decrease in the number of spasm on my right side.

My physical growth was very slow but I put on weight (in the mean time 3600 grams) but I was still not able to raise my head when I was laying on my chest. My movement was crampy and I preferred to keep my head to the left side. Since I was very calm and did not cry I was very popular with the nurses in the hospital.

Finally on the 19.11.96 I was allowed to leave the hospital and go back home to my family, but only for a short time.

My spasm became more frequent and intense. During an attack my left eye twitched and I had symmetrical twitches of both arms. It didn't improve and on the 25.11.96 they sent me to hospital again - this time to the neurological ward for children's. There it was completely different. Many patients of different ages where there, some with awful attacks and some with completely different neurological disease. I was still a little baby - so did not care which ward I was put in. As long as I had my food and a bed to sleep in everything was fine.

More EEG's were take, but nothing new was found. I still got the spasm with no special pathological findings, my family was released since I had no BNS disease. What a christmas present.

So far my heart was o.k. The ultrasonic scan showed no change. I was now allowed to drink as much as I wanted, whenever I wanted. This was great fun - the best news for a time.

My attacks became more serious, stronger and above all - longer. They gave me a new medicine called Luminal (Phenobarbital). I was feeling better and the attacks became less intensive. The EEG was o.k. They succeeded at last and found the correct dosage of medicine for the moment at least. I was allowed to go home again on the 13.12.96 - my first christmas at home.