Operacja serca w Munster - I etap korekcji wady
Ends at: 01 September 2015
28.08.2015 - Jaś jest już na świecie! Operacja była planowana na 3 września. Niestety, nie doszło do operacji - po otwarciu klatki piersiowej anatomia okazała się być inna. Jaś trafił na OIOM, jego stan był niestabilny.
7 września Jaś miał cewnikowanie. Trwało 6 godzin. Po cewnikowaniu rodzice Jasia napisali: "Najważniejszą wiadomością jest, że lekarze znaleźli 2 tętnice. Leżą nie tam, gdzie powinny i nie tak, jak powinny, ale najważniejsze, że są. Lekarze założyli Jasiowi podczas cewnikowania 2 stenty na jedną tętnice (lewą). Prawą zostawili w spokoju (na chwilę). Prawdopodobnie zajmą się nią na dniach."
Po kilku dniach okazało się, że można uniknąć pierwszej operacji - po założeniu stentów Jaś będzie mógł wrócić dopiero za 5-6 miesięcy na drugi etap operacji. Jego wada jest skomplikowana, ale był w dobrych, najlepszych rękach.
"Usłyszałam wczoraj po przywiezieniu go z zabiegu, że jest niesamowicie silny, waleczny. - napisała mama Jasia. - Z jego wadami, z tym co lekarze u niego zobaczyli, z wynikami, które ma są świetne. Walczy jak może, wierze, że się nie podda. Proszę go o to każdego dnia."
Jan spent his first days at the seaside, in Gdansk. He was only a few millimeters tall, it was not yet known whether he will be a girl or a boy. Then he moved, because parents changed jobs. Quickly got used to the limelight, walked with her mother on the shoot, he met photo models, photographers, met the latest trends in fashion - after all in the pictures he was covered with clothes from the latest collections. Until the day on which the photo that changed the whole life of Jan’s parents was created.... Picture taken not on the set, but in the doctor's office, not by a photographer, but by a doctor.
18th week, it was supposed to be a random test. Young parents wondered if they would already know who they are waiting for - a boy or a girl. They thought that the doctor wants them to bring joy and checks for so long, what the sex of the baby is. The doctor checked, but not the gender matter. He carefully observed the heart, knowing that any false verdict may unnecessarily disturb the parents. ‘Something wrong with heart, you have to go to a cardiologist’ – he finally said. He was not mistaken, there was something terribly wrong with the heart. ‘We identified a serious heart defect’ – the cardiologist said. ‘From the words of the doctor I remembered that the heart is not on the left, but on the right side.’ - Says Milena, mother of Jan. – ‘We have also learned that it will be a boy, our Jan.’ Jan’s heart defect is: asplenia syndrome (right isomerism), dextrocardia, pulmonary hypoplasia, atresia, single ventricle, hypoplastic pulmonary artery, single chamber, atrial septal defect.
There is probably no parent who after such messages would not ask: ‘why?’ And we asked ourselves, doctors, God. In the family we have a girl with a heart defect, could it be hereditary? It turned out that genetics is not the one to blame, the defect is serious, but it is not the genes. And if we want to save the baby, there is no time to look for reasons, we only have to think what to do next. Well, what next? He was and is the most important. We wanted then to have someone to take care of us, to say that it would be fine, that Jan will survive, that there are doctors who will help him. And we only heard that there is little chance for treatment and that he may not survive. Our little boy was listening to all that about himself, estimating his chances. He had to listen when doctors suggested an abortion - in accordance with the law, when they said this was a way to get rid of the problem. For us, the problem was not that Jan has a heart defect, we only pray to have someone help us find for him a way to live. We did not want to deprive him of life, just give him life, even though his heart was not as healthy as ours.
‘I'd give a chance to this child’ - when the doctor said these words, we felt that we are not alone. We believed that medicine is on our side and 3 operations will save his heart. Jan will take his first glimpse at the world on 28 August 2015 year so the first operation would await him at the beginning of September. The doctor told us to choose where I want to bear Jan. ‘And what's the difference? ‘- I thought. Only after talking with other parents of heart problematic children and browsing dozens of sites on the internet I realized that the life of Jan may actually depend on that choice. We did not want to read about children, who lost their battle at the beginning, and of those who as -a result of complications- have to struggle with disabilities - it was too painful. We wanted to read about children who made it. Then it turned out that with these small heart warriors, there is often one name mentioned - Professor Malec, Doctor Heart. He operates the most severe cases. Only in Germany.
We contacted the professor on Friday 12th June. On 16th of June we received qualification for the operation and cost estimate. We immediately started a collection. While John is in the tummy, he is safe. However, he will decide when to come into the world and this world is not a safe place to be for him. He can only withstand a few days without a surgery. Therefore, we must do everything so that this operation would be possible. In the medical records of Jan it is written that there is a possibility that the defect is non-operational. Many children blacklisted the same went for the last hope to professor Malec.
Once Jan could say goodbye to life, but we, as his parents we must fight for our son to the end. We are also stressed that Johnny could come out too soon, we struggle with our fears, with a sense of helplessness. When I do not feel that Jan kicks, I panic. Fortunately he reminds me of himself immediately, he shows how strong he is. I tell him to grow and gather the forces - before the life-saving operation.
Up to 6 months Jan drove with me to work. Now we are facing the most important journey - the journey for the repaired heart, which for half a year will allow Jan to live, then another surgery is ahead. If it was just about the trip, we would have waited at the hospital since August, but it’s not just about that. We need to raise money. And this is the most important task for the short time until Jan is born. At this time we will ask for help from anyone, because only in this way, our son will be able to live despite the heart failures. If you're here, please help us save our child ...
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