Saturation goes down… Home becomes prison, due to lack of immunity. Cyanosis. Heart that can stop forever at any time. The surgery is scheduled on 7 October. A huge amount is needed to save my son’s life.
I don’t know how many times I heard that it was the end. I didn’t believe it. Filip is fighting against a whole list of diseases. Such a complex heart defect is a death sentence for most of the doctors. It seems that the heart is giving up more and more every day. But finally, there is hope. Filip was qualified to Boston Children’s Hospital, where the doctors may save his life! Unfortunately, the price for my son’s life is enormous. With your help, we have a chance.
When you are expecting a child, you quietly hope everything will be ok. It has to be, after all problems happen only once in a thousand or million cases. There are a lot of tests, you count down to the first meeting. And then there came the terrifying news: heart defect. When I was 24 weeks pregnant, I heard the diagnosis. The doctor saw that the situation was serious, but I was only told that 3 surgeries must be planned and that they would make Filip healthy. Then I also heard something that terrified me. One of the doctors said “he lives in your womb, but it doesn’t mean that he will live after birth”. It took me a while to understand that… How was that possible?! I was waiting for the birth of my child, not his death. I didn’t want to and I was not able to count down to that. I didn’t accept that information.
The birth of my son was not joy and excitement… These emotions were substituted by fear, anxiety, worrying. Just after birth, my newborn son was resuscitated – the doctors did what they could to save his life. To make that vulnerable, tiny heart beat again… The first aim: to gain weight to allow surgery. I hoped that what the doctors planned would be quickly performed. Quietly, I begged my son to find more strength.
Right after the surgery, there were complications. Instead of one surgery, my baby had three surgeries in 7 days. During the last one, his heart surrendered. It was tiny, weak, damaged. The doctors resuscitated him for an hour – it was a heroic fight to save my tiny hero. Due to the effort, Filip’s heart was so swollen that the doctors couldn’t close the chest. Filip was in a pharmacological coma. Open heart… The sight was tearing me into thousands of pieces. Only one thought came to my mind: fight. Unfortunately, all I could do was to wait… Wait passively, hoping that Filip would show his strength.
Filip is only 5, but hospital rooms are more familiar to him than his own backyard. He has already had 7 life-saving open heart surgeries and many follow-up procedures, each under general anesthesia. He went into this anesthetic dream over 20 times. General anesthesia is a major burden for Filip’s organisms; each time, epilepsy is a great threat. Last year, we saw it very clearly – the seizure lasted for over 2 hours!
Until a certain moment, Filip was accepting everything that was going on, he could have all procedures done, he allowed punctures. Unfortunately, the number of procedures and the accompanying pain brought the final straw that broke the camel’s back. Now, every information about hospitalization causes crying; Filip is terrified. When I see the fear in his eyes, I am afraid what would happen when we get there… I don’t know how to explain, how to convince Filip that it is all necessary. The worst thing is that there is no end. No one can help us. My son’s damaged heart needs a specialist in complex defects. We tried Polish doctors, but they cannot help Filip. Consultation with doctor Malec was also not successful – after the first tests we were disqualified. I look for help for my son everywhere. I’m sending medical records to specialists all over the world.
I was turned down so many times, I got so many negative answers that I slowly began losing hope. And then, when our chances reduced drastically, I got a hint that doctors in the U.S. do such surgeries. Sending medical records to Boston was our last chance. There is also one more option: treatment in Texas. Me and my whole family are trying to find contact to the institute that can save my son’s life. I will not give up. Not now, when Filip has gone through so much, when we sacrificed so much to save him.
Until a certain moment, hospital visits and a huge scar were the only thing that were a difference between Filip and children he met sometimes in the playground. Unfortunately, over time, my son has less and less strength to play and his peers start to avoid him. His disease is taking his happy childhood, his breath and normal life away. I don’t know how to explain this to him. How to explain that I look for solutions on the Internet at nights, when I keep an eye on him when he is sleeping. I look for a contact to a specialist who would tell me that there is a chance and that he/she can help us. Our house begins to be a cage. Frequent infections give us no other choice. When you can only listen to your child talk about his dreams, but you cannot make them come true…
We were qualified for a surgery in Boston Children’s Hospital. American doctors analyzed my son’s records and they see a chance. The cost of the surgery is almost one million Polish zloty, but the final price can be higher! I cannot sleep at night because of this, but now, when there is a chance to save Filip, I won’t give up the fight. The fight for life, breath and the beating heart of my son. For the ability to walk him to school one day, to start living normally. I beg you, please help us. Each amount of money brings us closer to the travel for the surgery that can save Filip’s life. We are waiting for the date of the surgery, but I know we must be ready and we must collect this huge amount of money. Amount that is absolutely beyond our reach. This is the price for my child’s life.
Each day of Filip’s life is a miracle, and each night is a time of waiting. During the day, my son is taking 16 medications that support his heart. Each infection is very dangerous for him – this year was a real challenge for us – almost 5 months in a hospital due to pneumonia. Hospitalization made Filip’s legs forget how to walk – he had to learn it again. I don’t want to think what else could happen. Please help me save Filip!