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Heart disease Basti needs help!

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Treatment in the US including airfare

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About Basti

My Story


Hallo, I´m Basti,
I´m only four but I can already tell a lot about my life.

Even before I was born it turned out that something was wrong with my heart. It was a very complicated heart defect (double inlet left ventricle), which cannot be repaired. But the doctors told my mum and dad that I would be able to lead a pretty normal life if I had three big operations. So my parents decided to have me and started the fight for my heart.

I was born in Erlangen on June 25, 2013 with only half a heart. Nine days later I had my first big operation. After more than eight hours my parents could finally visit me in the intensive care unit. There were no complications, so I could leave the hospital ten days later. It was great to be home, but four and a half months later I had another unplanned operation. Without any complications, I recovered quickly and went back home again after a one-week stay in hospital. In November it was time for the next big operation. Again mum and dad had to wait hours until they could finally hug me. They were so happy. But this time complications arose. My heart rhythm and therefore my pulse were too slow now. At first the doctors thought I needed a pacemaker but it turned out to be unnecessary. Fortunately I recovered without it. So my parents could take me home. We knew that I would have the last big operation at the age of three. Until then I should gain weight and have regular check-ups at a cardiologist for children. I was finally able to live an almost normal life with my family. I developed at the same rate as other kids my age, learned to speak early and became a truck-expert. In September 2016 I even started going to kindergarten. I really enjoyed it. However, I soon realized that I was a bit different than the other children. They were able to run very fast and long distances too. But I often had to rest because I ran out of steam. So now I had to get through my last big operation. On November 29, 2016 my parents told me that I would have to go the “heart-garage” to get my heart fixed. So they took me there. The operation went OK. This time I got a pacemaker just in case my heartbeat would cause trouble again.

Unfortunately the nightmare began shortly after. My body just couldn´t drain the excess fluid so I needed special drainage ''tanks'' to dispose of the fluid. Also the doctors found out that I was losing lymph. That is a major problem as it is full of things that give your body energy and power and contain proteins such as antibodies that help fight harmful organisms, a situation that could really be dangerous for me. Also due to the excess buildup of the fluid in my body I wasn´t able to breathe properly because the fluids would put pressure on my lungs. I had to go on a fat-free diet as the doctors were hoping that it could stop my “tanks” from getting filled again. But after three months the diet-experiment was abandoned. There was absolutely no success. The only thing that happened was that I lost a massive amount of weight. I had to be put on a drip to get enough nutrition. Meanwhile the doctors found out that my pacemaker hadn´t been installed properly. They fixed it during another operation. Even the attempts to improve my situation with all kinds of medicine failed. As you can imagine the physical and psychological stress put on my parents and myself was unbearable. I yearned so much to live in my new house, which my dad had renovated during all my time in hospital. It still seemed to be wishful thinking to play in the big garden and sleep in my new room. The room in the hospital became my home once more. Either mum or dad shared it with me. We had various roommates for some time, but the only child that always had to stay, was me. In May 2017 a cardiac catheter examination was carried out. My next operation turned out to be inevitable. It was exactly the one we were hoping to avoid. An excess flow valve was put in in order to lower the pressure in my “blood highways”. As a consequence I ran out of steam quickly, so we had to go to hospital again which was really hard on all of us. Because I was physically extremely weak, the doctors became really worried. They weren´t sure if I would survive (A fact they told my parents after the operation). Daddy stayed with me all night and I could leave the intensive care unit the next day. I was very weak and unable to eat. I was in bad shape for nearly four weeks. I had my fourth birthday during this time but I didn´t feel like having a party. However, on July 21, 2017 I got rid of my last tank. I celebrated this great news by throwing the tank over the balcony of my room. We could hardly believe it: I was allowed to go home.

I fully enjoyed my life for some weeks. I went to kindergarten and became a good rider on my bogie wheel and tractor. I was in good shape, even though I had had a cold for quite a while. I felt OK until Christmas 2017. But then breathing became more and more difficult for me and I could hardly eat. I was always tired, too. This was probably due to the permanent infection which caused enormous contusions.

We spent Christmas at home but soon afterwards I was so weak that we had to go the hospital in Erlangen again. The puncture of the contusions didn't have any effect and so new tanks turned out to be inevitable. So I´ve been carrying around my two companions since January 2018 and they´re running and running. The doctors in Erlangen have carried out lots of examinations again and found out that my problems originated from my heart. But momentarily the main problem is my lymph system. Constantly having these contusions is life-threatening for me and the facilities in Erlangen are limited. So the doctors got in touch with the only expert worldwide. He works at a children´s hospital in the USA. My mum and dad told me that he can do magic and make me live without my tanks. That sounds fantastic, but the bad thing is that treatments in American hospitals are extremely expensive and you must pay for them yourself. Furthermore, I would have to travel in a special plane because of my tanks. This would also be very costly. My health insurance needs an estimate of costs from the children´s hospital in Philadelphia in order to decide if they could pay for my trip. We´ve been waiting for it for several weeks now.

So all I can do is wait and spend my life in hospital. Mummy and Daddy hardly see each other anymore because one of them is always in the hospital with me. During the week my mum joins me and on Saturday and Sunday it´s “boys´ time” with Daddy. I have so many plans for my “tank-free” future at home. Most of all I want to celebrate my fifth birthday in June with my family, my cat Michl and all my friends in my garden. Everybody will get a funny hat and we will have a great time in my little pool…




My diagnosis


Bastian was born 25.06.2013 suffering from a double inlet left ventricle (DILV). He had successfully undergone a Norwood-I procedure, aortic isthmus correction, and Glenn procedure at the Paediatric Hospital of the University of Erlangen, Germany without any significant complications.

However, following the fontan completion procedure on 29.11.2016, in which a pacemaker was implanted, Bastian developed a chylothorax within days of the operation. During the course of two intracardiac catheterisations to optimise haemodynamic performance, Bastian was proscribed with medication to lower his pulmonary pressure, placed on a three-month medium-chain triglyceride (MCT) diet  and supporting preventative nutrition (due to his substantial weight loss). Unfortunately, none of these treatments were successful. During this the pacemaker didn´t work probably, requiring surgery to install a new unit.

After six months of having pleural drainages yet still suffering from a chylothorax, Bastian had to have a new catheter installed, which made fontan fenestration impossible. This procedure took place on 09.06.2017, replacing the pacemaker to also make it MRI compatible. Although Bastian was released from the ICU one day after the operation, he was in a significantly weakened physical condition.

Despite this operation, he continued to require the pleural drainage. Based on his depressed mood and weight the MTC diet was not continued. Fortunately, the right and left drainages lines were removed on 10.07.2017 and 21.07.2017, respectively. Between the removal of these drainages a cortisone treatment was also administered. He was released on 22.07.2017 with an effusion of approximately 1cm on each side.

Things were running well at home. Bastian was feeling well and showing visible signs of improvement. He was enjoying eating again and was able to return to preschool in September. However, in mid September he developed a cold and shortly after had a substantial pseudomonas Krupp attack with the cold remaining. Pleural effusion periodically increased up to 3cm during this time, however dropped again to 1.5cm. At the start of December, strong coughing symptoms were apparent and the increasing rate of effusion most likely triggered by an infection. Bastian’s oxygen saturation became apparent and he developed a lack of energy and low appetite. He was proscribed a therapy of Salbutamol and Budesonide inhalation. Unfortunately on 24.12.2017 Bastian began vomiting at night, developed fever and suffered significant breathlessness, with blood oxygen saturation falling towards 80 percent.

Our paediatric cardiologist observed effusion between 4 and 5cm on 27.12.2017 and we drove to the clinic in Erlangen on the same day. In the first attempt, Lasix (IV) was administered, which sadly did not have any considerable effect and required puncturing of 600ml of effusion. After the fitting of new pleural drainage tubes a further 800ml was drained. Oxygen saturation normalised again after this intervention. The coughing and presumably the infection declined. The effusion rate, which had been 70ml/24h and 170ml/24h for the right and left sides, respectively, increased over the course of a few weeks to 500ml/24h, a rate higher than any previously measured.

A professor from the clinic in Erlangen made it plain to us in a sobering discussion that, despite our hopes, the effusion alone is not triggering the infection, but rather that he interprets Bastian’s immune system as being too weak, given that an infection can lead to such symptoms. He told us that he does not believe the effusion can stop by themselves, giving Bastian a very bad prognosis. An MRI of the lymph system did not reveal major irregularities. In their final diagnosis, the medical team in Erlangen indicated complications to Bastian’s lymph system, referring him to a specialist clinic in Philadelphia, Pennsylvania (USA) as his last chance.

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