Since he was born, every day has been full of love but also full of fear. Oncology, chemotherapy, days and nights full of hospital scent – medical record of Jan would be enough for several adults. And also heart defect as a bomb with delayed ignition. An operation that may cure his heart can be done only in USA and it costs fortune. But the life of this child counts much more than money. We fight for him so that he can live the long and happy life. But this can happen only with your help.
John’s story started the similar way than stories of many children with heart defects: the joyful waiting for the a new baby to be born, standard medical tests and then doctor’s words: there is something wrong with the heart. It was total shock at first, then desperate life-saving battle. It was not easy to find a doctor who could deal with the problem. Finally, Jan has 2-hours echocardiogram test in hospital in Wrocław. The diagnosis was: transposition of great arteries (L-TGA). This is a very rare defect: only about 0.5%–1% of all babies born with heart defects have L-TGA. It was the first time the doctor could observe this defect during pregnancy.
In ninth month of pregnancy, during the next examination, doctors called for psychologist. The state of John is critical, he may not survive – the parents heard and it was the very scaring news. It was not only L-TGA defect but also Ebstein’s anomaly (malformed tricuspid valve) and supraventricular tachycardia. The fight for John had to be done prior to his coming to the world.
Warszawa, Wrocław, Kraków... parents visit many specialists for examining and consultations. John comes to the world on 15th of July 2015. He is so pale – mother thinks, looking at his beautiful face. The same day John is taken to the hospital in Prokocim to be thoroughly examined. The heart is stable but his platelet count falls much below normal and this is the reason for his paleness. The boy is given iron medication and is sent home. Parents are advised to make blood tests every week. In autumn, tests results are so bad that mother takes John to the hospital. It is November the 11th and they are to stay there for three days. They do not know that John will leave the hospital not earlier then in ten months…
Bone marrow puncture results are good but blood tests results getting worse and worse. Doctors try different cures but nothing helps. Additionally, every medication is a big burden to the heart and causes frequent supraventricular tachycardia attacks. It is getting so bad that John needs a blood transfusion every few days. Frequent blood collecting and intravenous medication administration is very painful and his body is getting purple from needles. After four months doctors are sure: bone marrow aplasia, severe aplastic anemia. John depends on transfusions so he cannot leave the hospital. He needs bone marrow transplant to survive. But first, he needs very strong chemotherapy to kill his damaged marrow. He is given so many medications: for marrow, for heart, against transplant rejection, etc.
Finally, doctors find a marrow donor. Mother remembers this day very well: it is 21st of April and she is observing her son being born again thanks to the new marrow given to him by the donor. Blood test results are good again. It was so amazing to see him looking healthy again – says his mother.
However, bone transplant is not the end; it is the beginning of the way to health. There is still the risk of transplant rejection. John is given medications every two hours: for heart eight times a day, for immune stimulation, for liver, for blood, steroids, etc. The defect is getting worse. Jan is growing up but his heart is getting weaker and this will not stop. Doctors said that he might even need heart transplant.
But it is practically not possible to receive so small heart for transplant.
But there is something that can be done - John needs a surgery called “double switch” which means rerouting blood in atrium level and in arterial level. But these operations are not performed in Poland or in Europe. We contacted many hospitals around Europe and we received the answer only from two of them, from Great Britain and Netherlands – say parents. Doctors at these hospitals have recently started performing such operations but only for children up to one year old, so it is too late for Jan. there is only one option for him – hospital in USA.
Doctors at Boston Children Hospital are the best cardiologists around the world; they have already performed about a hundred such operations. Joh has been qualified for the operation. The first part of operation – banding – must be done before the second year of life, otherwise the chance is gone. Around half a year later, arterial switch should be performed. The total cost of curing Jan’s heart is about one million zloty; the first part costs about 300,000, the second part more than twice that price.
We have considered the first operation (banding) to be done in Poland but it occurred that even the smallest mistake would disqualify Jan from the second operation. And this defect is so rare that Polish doctors have not got the necessary experience yet. Also John is a patient of a very high risk. Having the operation in USA gives him 98% chance to have the healthy heart and live the normal life. We cannot risk our son’s life. What we have went through, gave us the strength to continue fighting for him. Now we know that nothing is impossible. We cannot and we do not want to wait until it would be too late.
Even not severe infection makes John to come back to hospital and is a big burden to his heart. Only surgery can change this. The situation is very difficult. Older siblings were waiting for the smallest brother and he disappeared from home, together with Mother, for almost a year. They had to grow up earlier. Due to John’s heart condition, nobody is allowed to visit our older children; every infection that John may catch from somebody would be deadly dangerous to him. We cannot take our children outside the city for holiday so that they can rest a bit and forget this nightmare of disease for a while. Unfortunately, John must be close to hospital all the time, in case something bad happen; supraventricular tachycardia attack is very dangerous. What we long for is a little bit of normality and this is possible only if John has this operation that would cure his heart.
When John came back home after staying at hospital for almost the year, he was scared and was crying; he had spent his whole life in hospital and did not know the home. He was supposed to die but he is here, he lives and every day, when looking at parents with his blue eyes, gives them strength to keep fighting for him. We won the first battle - for John’s marrow, now the second battle has started - for his heart. But this can be won only with your support. We have time only to his second birthday. Will you help to save John’s life?