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Our hope that has been there with us since the very beginning of pregnancy, it’s there till today and only this hope lets us live. It began quite as usual in such situations. There was joy, there were smiles, congratulations and long night talks about the future with our baby. It was the greatest day of our lives. Unfortunately, it only lasted for a month…
The first antenatal screening was exciting. We were very interested. We were to see our baby for the first time and this thought made us happy. It ended up with tears and horror. We couldn’t gather our thoughts. The doctor couldn’t find the right hand. Or, actually, he found out that the there’s no radial bone that should have been there by this time. There’s a problem with the hand – a simple sentence that turned our lives upside down. As far as a pregnancy, a baby is concerned, there’s no room for problems.
No-one could be prepared for any problem! People expecting a baby are prepared for congratulations, choosing a name, making plans, preparing the baby’s room… not for any complications. In the mother’s belly, our baby was safe, but the time had to come that it would come to this world and we would have to challenge the problems. Had it been only a hand… Unfortunately, there were another screenings. Each of them showed us another piece of this association of congenital defects. Each of them was unbelievably painful. The lack of the radial bone – we kind of got used to this thought. We kind of accepted it, analysed possibilities and found solutions. The whole rest – we were not prepared. The next screening, another frown on the doctor’s forehead, endless silence and careful watching of the display. Such moments are unforgettable for any father, any mother of a baby that is growing with defects. Again… another problem… the anus. Probably, there’s none. Instead there’s panic and fear. We couldn’t imagine what would happen. We were waiting in fear but we loved our baby boy more with every day. We knew we could lose him. And we knew it would be a boy. You can imagine how a father is proud of having a boy! You can’t imagine how scared he is of having a boy with so many health problems.
Finally, little Adam was born on 12 September 2016 but we could not see him immediately. He was taken from his mom as soon as he came to this world. He had problems with breathing. The doctors had to help him survive. The diagnosis was even worse than the antenatal one. Adam was born without a radial bone, without both thumbs, with a crooked ulnar bone, without the anus, the head was too small…
He couldn’t eat. He was quickly transferred to a children’s hospital and connected to a drip. It was a nightmare. We couldn’t help him, we couldn’t calm him down, take him on our hands, we couldn’t hug him. We could just watch and hoped for the best.
Adam needed a drip for 2 weeks. In his 3rd day he was operated and got his intestine out of his belly, so he could survive. It was the only solution. This little baby had to fight for his life on an operating table. The doctors and nurses in Krakow did everything to help him, to let him eat and grow.
We spent the first month in the hospital. Adam was consulted by many doctors. Each of them diagnosed him with something new. The list of the problems grew and caused us exquisite pain.
Thyroid, sexual organs, hernia, deformed skull, dysmorphic face, too little head, partial agenesis of corpus collosum, problems with hearing…. We couldn’t listen to it anymore. Why did it happen to him? To us? Horror… But there’s no use crying. We won’t help him this way. We need to act, we need to fight for Adam’s life. We’re happy to have him and we’re doing our best to help him. Adam’s home and he eats, sleeps and smiles just like other babies. He doesn’t know what awaits him. We know and it makes us cry again. This year, he’s going to have another two surgeries in Krakow connected to his intestines. We’re still waiting for neurosurgeons to decide about the brain and the skull. Some problems might be solved in Poland. Some, Adam must get used to and live with them.There’s a problem we can solve, but we cannot do it alone. Adam’s life is one big fight but he can live quite normally. He just needs your help. His right hand is crooked and short. Both hands lack the thumbs and thus, he can’t catch his toys. But there’s a solution to that and it is based in the United States.
Dr. Dror Paley, who treats the most serious cases in his clinic in West Palm Beach, Florida, after seeing Adam, gave us the solution. Thanks to 4 surgeries, Adam can have thumbs and the right hand as long as the left one. The radial bone needs to be straighten and the wrist needs to be ulnarized – moved so it is stable on the ulnar bone. Then, there are 2 surgeries of lengthening the right hand. Thanks to these surgeries, our baby, at the age of 14, could have two straight hands with thumbs. We have now a great challenge which is not our ambition but the utmost need. Every parent would like to have a healthy baby and our chance for this is now gone. However, if we succeed, we could give him quite a normal life. In order to do it, we need to raise an enormous amount of money. The first 2 surgeries by dr. Paley are estimated for 280.000 U.S. dollars! The number threw us off balance. Still… we believe it’s not impossible.
We need to believe we can do it, but we cannot do it alone. That’s why we ask you for your help. We can’t afford it and thus we would sentence our little Adam to live with disability. We would love to erase such a scenario from our lives. Adam is growing up and this is the best time to help him. The first operation needs to be done before he turns 2. We can’t watch him trying to touch us, reaching his little hands towards our faces… Please help us! We believe we can do it together with you and we will be extremely grateful for any kind of help you can give to this little man.