HLHS - Definition of our misery
operation in Münster
Ends on: 15 July 2016
There were no signs of the tragedy. We did not expect that our baby would not have half of his heart and he would have to fight for every moment spend in this world. With a heavy heart we looked at our son, lying in a tangle of cables in the cot, in a sterile hospital room. We were told to wait 5 years in uncertainty, in fear for every day of our Antek.
Antos was to be born as a healthy child. When we went for examinations, the results were excellent. The doctors said that he could be shown to students as a great example of the growing child. Antek came into the world by caesarean section, received 10 points in the Apgar score. The first night of Antoś out in the world passed quietly. In the morning, together with my wife, we enjoyed our little one, until the nurse took our son for monitoring. Then I left the hospital. I walked only a few meters when I heard the phone. Agata called. She said these words „there's something wrong with our son”.
Instantaneous adrenaline rush... – dad's reminiscences. Other children were returning from the monitoring and Antek was still held there. Doctors diagnosed him with pneumonia. Antek spent the night in an incubator. In the morning the nurse reported that his condition had deteriorated. The doctors held a consultation with a cardiologist. Then there was a suspicion of congenital heart disease. The parents asked themselves the question: why us? But there was no time to look for answers. They had to act.
Our son was transported to hospital in Lublin. It was there where we heard the terrible diagnosis – HLHS. Echo showed that Antek had no left ventricle. Finally, the operation took place in Warsaw. The operating doctor said that he would like to have such patients – all went well. When Antek was about to leave, it turned out that he had a bacterium. He had to stay in hospital. After another week – deja vu – doctors had almost discharged him when blood clots were found. He left ICU after three weeks. Later, another month was spent in hospital…
He got a huge amount of antibiotics. He did not want to eat, he was vomiting, was fed with a probe. His small body rebelled against the unnatural amount of chemicals introduced to him. Only when there were no painkillers allowed, his condition improved. For another two months we went from hospital to hospital in order to return home for a month. It turned out that Antoś had postoperative stenosis of the aorta. They prepared him for catheterization. That day, when we found out about the catheterization, a small smiling boy from the room next door, did not come back from such surgery, he died. For us, the nightmare began, unimaginable fear, greater than before the first operation, because then we were not really aware, and not even admitted such thoughts, that Antos would not handle it.
In October, Antek was to have another catheterization, but leading doctor decided that a stent should be inserted. Later, the boy received the qualification for the second stage of the operation. We spent two weeks in hospital. When we returned, Antek quickly came to himself, he began to crawl, then walk, and even run... We had to wait for echo for a year. Catheterization was suggested to be planned at the turn of 2017/2018... no one could tell us when the third stage of the operation would be... Finally, the time span of 4-5 years was given. We were told to wait for 5 years in uncertainty, in the fear of every second of our son's life!
The doctor claimed that Antos was doing well and such an operation will not be needed. He suggested that in 5 years it will be the right age. We could do nothing but agree with that. We are not doctors, we thought it was the right solution. But my husband while seeking for information about the disease of our son found the article by the same doctor who had written that such an operation has best results when the patient is 18 months old...
Then we made a decision about surgery in Münster. This involves risk, but it is also an opportunity. Professor Malec told us that Antos should have never had a stent inserted.. Now it's too late, the stent cannot be removed... Despite many adversities, we try not to give up. We have someone to live for – Antoś is our real treasure. He loves Minionki, calls them „nionie”. Now he is entering „cars” phase, rides them or rather drops them from the table. He also loves to be outside, chase chickens, have fun. He is in a rebellion phase of a two year-old, tries to rule throughout the house. At first glance you cannot see that he is sick. However HLHS cannot be forgotten – heavy breathing, reticence, problems with the performance of certain activities.
Our son's life is for us the greatest gift. We look forward to every smile, spoken word, stirring up trouble by him. We hope that he will develop properly and he will lit up our lives. But this also means such mundane matters like money. Therefore, all people who would like to support us in the fight for the life of our Antos please help.
The third stage of the operation is a great opportunity for „Nionio”. During his treatment many mistakes have been made. This time we want to change the bad luck. We believe that with your help Antek will be able to receive professional care and be treated by Professor Malec.