Jan was born on time, exactly on 28 August of 2015. The most beautiful and- at the same time the scariest day of our lives. Our beloved son was born, but at the same time, anything could happen. Once I could finally touch him and cuddle, time stopped for me. I looked at him, he opened his eyes and I knew I would never give up. I'll do anything to save his life. It was love at first sight. I could hold him just for one minute, then he was taken away from me. I knew that it had to be done. His life was in danger, his defect is critical.
Before the operation he was brought to me for a while. Seeing nurses exporting my son in a great incubator with various utensils attached to him was scary, but I was focused on him and how much I want him to live. After I gave birth there was a complication, I bled heavily, but despite losing large amount of blood, I could not resist seeing Jan waiting for surgery on intensive therapy, which unfortunately ended up fainting. The first operation was scheduled for the sixth day of life of our baby.
I knew that he had to be taken away from me, but I did not expect him to come back so soon from the operation. The operation started, the doctors opened his chest, but it turned out that the arteries are situated differently than doctors expected, and the operation is impossible... I was in deep shock and anticipating the worst, but after talking to Professor Malec I calmed down, knowing the doctor’s team will do everything in their power to help Jan. They gave him the weekend to rest. Four days after the operation attempt Jan underwent cardiac catheterization, which was to last up to two hours and it lasted almost seven. The doctors inserted stents inside arteries - scaffolding to help them grow in order to make a surgical correction in the future. After two weeks Jan returned home.
Jan’s heart failure is very, very complicated. We do not want to even think what would have happened if we had not taken a decision to turn to Professor Malec and his team. We remember the first echocardiography, when Jan was still in the belly, and the words of a doctor in Poland- that there are slight chances that someone would make the risky operation. The arteries could have not expanded, and then the defect would be non-operational and Jan could no longer be with us. Then we had doubts whether to go to Germany, if it was a good decision. Now we have no doubt – Prof. Malec team gave life to Jan, they gave us even more hope, they gave him time of a few months of normal life. This time is running out, another surgery must take place relatively quickly - between the fourth and sixth month of his life.
The complexity of the anomalies of Jan’s heart makes the defect not yet called- it is so rare. Its description cannot be found in any book. Jan’s case is very unique. And we are particularly afraid of his future. From day to day his saturation is dropping. During each oximeter measurement of his heart we are afraid we'll see the critical value. Jan needs help. Without surgery he will not be able to live.
Maybe we missed breastfeeding, we cannot go to the mall for shopping, we cannot be amongst a large number of people, because Jan has very little resistance, and has to get an antibiotic every day. Even though, we manage to live like most families, we are the happiest in the world. God has given us a miracle, a miracle for which life we are ready to fight. Without support of good people, there would be no Jan today…so thank you from all our hearts for supporting us before. And we hope that this time you will also help us in this fight.
Milena – Jan’s mother