Meet Tadeusz. He recently turned one. He lives in Wrocław, Poland, has loving parents. He is smiling imp. This little boy loves to be involved in our everyday activites. He is very curious and plucky boy. Tadeusz has a dog named Czarek and they love to hang out together on the floor. How does he differ from children his age? He was born with very rare complex heart defect. He underwent two operations and spent a lot of time in the hospital. Tadeusz went through more than most adults in their entire life.
Tadeusz, our son is fighting for his life since the beginning. The joy of the birth of our long-awaited child was very soon replaced by fear for his life.
Tadeusz was born with an extremely rare and complicated congenital heart defect - Congenitally Corrected Transposition of the Great Arteries with pulmonary atresia and the large ventricular septal defect. This means that his heart is inversely built, the heart chambers are incorrectly connected to the large vessels coming out of it. What is worse, the blood supply route to the lungs was overgrown and there was a large hole in the ventricular septum. Additionally, the tricuspid valve is abnormal and its regurgitation was diagnosed.
Now we are facing a big challenge, doctors from Poland can’t help Tadeusz anymore. After intense searches for information for saving our son’s heart we got hope from the U.S. Doctors from the Boston Children’s Hospital promised to help us.
The treatment consists of two surgeries. First is applying a banding – it’s a surgery involving stenosis of the pulmonary artery trunk with a special band.
Our fundraising is launched to collect money for this operation. If the surgery is successful, then 6 to 12 months afterward a second operation will be possible – the one that is supposed to be the final and actual correction of Tadeusz’s heart defect. It will restore the proper connections between the heart chambers and the great vessels coming out of it. If all goes right, Tadeusz has a chance for a normal happy life!
Lack of surgical treatment can mean a progressing heart failure and a heart transplant. This means a drop in Tadeusz’s life quality, chronic tiredness, breathlessness, weakness, swelling and slow painful death.
The operation is a chance for a future and normal life for our son and we will do everything to make it happen. However we can’t save him on our own. The cost of the operation is enormous... Both surgeries in total are supposed to cost 350 thousand dollars. We can’t allow money to be the obstacle to fighting for Tadeusz life. We need thousands of people of good heart to fight for his heart with us!
A little bit more about Tadeusz.
We’ve learned about the cardiac defect already during the pregnancy at the anomaly scan. That’s when we realized that our child will face several complicated cardiac treatments. That’s also when we decided that we will fight for the life of our son no matter the costs.
The history of our son’s cardiac defect treatment and everyday life with a disabled baby.
Tadeusz spent the first days of his life in an incubator in the neonatal ward. He was barely 9 days old when he’s - had his first surgery! Thanks to a small 4mm tube Tadeusz gained couple months of life – he was able to breathe and develop as a baby to soon again face another battle on the operating table.
We took Tadeusz for the first time home a month after his birth. In the following months we had to learn how to monitor the level of his breath/oxygen saturation. Tadeusz was getting weaker with every month. He didn’t have the power to eat, turn on his belly – we saw that he’s lacking the energy to live. With every following week, the skin of his fragile body got more pale and thin. All this meant an upcoming next surgery. If we waited longer it could have meant hypoxic brain injury.
Again, we were back in the hospital with 6-month-old Tadeusz. A next surgical intervention was necessary - the Rastell-Senning operation. It’s one of the most complex and difficult cardiac surgery, rarely undertaken in the world and barely ever performed in Poland. We were informed that such a treatment is burdened with a high-risk death ratio. Due to the lowering level of Tadeusz saturation we didn’t have time to look for help in other hospitals. We had to act.
Saying goodbyes to your child before the operating room is an extremely stressful and difficult time. It’s an experience no parent ever wants to go through. We faced such a challenge for the second time and surely not last...
Since then for few hours the life of our firstborn was in the hands of the cardiologist and team on the Lódź hospital. Unfortunately during the surgery they’ve withdrawn from the planned procedures. Only the valve was implanted and a patch was sewn to close the ventricular septal defect. For the next two weeks Tadeusz was fighting for his life in the intensive care unit. His weakened heart required support, his lungs got attacked by a dangerous infection. It was for him and for us the most dramatic time. Instead of a safe home he had a crib on the intensive care unit. Instead of his parents' voices he heard the sound of the life support machines.
By the end of February, after almost two months in the hospital, we came back home all together. Tadeusz was extremely skinny and very weak. We were facing intense rehabilitation, which was interrupted for a few months by the worldwide pandemic and now we are doing all in our power to collect money for the first surgery in Boston Children’s Hospital that will bring us one step closer to a normal life for Tadeusz.
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Tadzio’s parents, Magda & Piotr