“He taught us that patience and effort are always worth it”
Dear Leon you are in our hearts forever…. This is a story of love, the love we all have for our family. We will fight for you till the end of time.
October 27, 2017- Little Leon came to this world, our little lion heavy 2590 g, 48 cm long. He was immediately taken aback by various medical problems, infections, transfusions that caused him to spend the first 45 days in the hospital. A lot has happened in those 45 days, from the worst moments to the best, during which Leon grew and during which we observed and remembered every little thing. With this little but big fighter we survived everything and Leon finally came to his house in Zadar and celebrated his first Christmas in a warm house with his dad and mom. Our little hero made our lives better during those first few months, which were also very difficult. We met the greatest fighter and little hero who gave more and more strength to everyone around him every day. From that pain and weakness at the beginning he became a powerful little invincible guy who, after 8 months, sits happily in the feeder and wants to feed himself. He taught us that patience and effort are always worth it, and that love is everything in this world. You are and will remain the best son, forever!
Our son Leon was born 27.10.2017. at 10:25 a.m. heavy 2590 g and 48 cm long. He was born in Zadar, a coastal city where my husband Denis and I have lived for the last 7 years. Leon was born with TAR syndrome and he was the only child with TAR in Croatia!. Looking at the literature, the possibility for TAR syndrome is 1:250000 children born. Leon was birthed with emergency C section and was immediately put in an incubator for the first examination. His father Denis welcomed him to this world because I was still in surgery. First examination confirmed that Leon has low platelets and that his forearms are shorter and missing a bone. They also determined that Leon has a VSD (ventricular septal defect) and a small hole on his hearth and hypospadias. First look, Leon was so special, he immediately opened his eyes and just watched the world, and he looked ok, like there is nothing wrong with him, like there is no diagnosis at all. He was in an incubator for the first three days of his life. During those 3 days I would walk down the corridor to the intensive care as often as I could, just so I can see him, be near him. I was trying to start my milk alone because Leon and I had no chance for the first contact after birth and he didn’t have the chance to eat from by breasts, all because of doctors and nurse’s ignorance and fear of TAR syndrome. Starting my milk was very hard, but I knew it was the best and as we later found out almost only option for his infant food. All of this was aggravated by the fact that they wouldn’t let us hold our son in fear of dropping his platelets if we moved him from his incubator. When I woke up from the surgery I only had a chance to hold our son for 2 minutes, Denis way less. Doctors were so afraid of Leon syndrome because of their ignorance that we almost weren’t considered his two closest persons, but a danger to him and his condition; that was a horrible feeling. Those first days it was a privilege just to watch Leon. He was beautiful, all we have heard from doctors during the pregnancy, all we have seen on the internet was so scary, so frightening, but now when we met, it was all a lie. He was a great, beautiful little boy with black eyes and a deep stare, a boy who squeezed my finger when I put it in his little perfect TAR hands. I fell in love with every fiber of this new life, and fell only deeper with every passing moment. Hey, they told us he might not have fingers at all, and if he does they would not be functional, but he squeezed my finger, I was so happy, so grateful, so filled with love.
On the 4th day we were sent to Zagreb, our capital, because of his diagnosis, we needed some answers for his condition, doctors in Zadar were not familiarized with TAR syndrome, well doctors in all Croatia because of its rarity. Doctors in Zagreb were great, they started reading about TAR, contacting colleagues that could help them, they listened to us and our knowledge about TAR we accumulated during pregnancy and listening to Watts family experience. In Zagreb, we had the chance to be alone with Leon, to hold him, to breastfeed him. I don’t have to tell how frightening that was, mainly because of how doctors scared us letting us believe he can be hurt that easily even by us, but also how beautiful it was to hold him, kiss him and watch him. Our tears just flowed from our eyes; that was a sleepless night. I stayed in the hospital with Leon; Denis was in an apartment near the hospital. First two months of his life Leon and I spent in that hospital, he lived through so much that in that time it can’t be fitter in a few sentences. He got sepsis because of some bacteria in his intestines. We found out he has a bowel malrotation, and that the bacteria came there because of the feeding formula that contained cow milk that we additionally gave him. He was constantly on my milk, but because of his weak state, him being only 10 days old we were forced to feed him formula where we found out about his cow milk intolerance. On top of it he got an urine infection too. His vein was almost impossible to find, although they managed, that was a hard period of our lives, with very hard decisions, decisions that could have had heavy consequences, but we had to make them very fast and hope they are the right ones. After 45 days in the hospital and so much bad diagnosis, examinations, EEGs, ultrasounds, EKGs, X-rays, vein searching, ICU finally came the day to go home. On Dec. 8, 2017. We got out of the hospital into our car and drove home for 3 and a half hours until we came into our house for the first time since Leon was born, for the first time since that night. It was all so surreal, we asked ourselves if this is real, is Leon really ours, will we know how to take care of him, to protect him, to keep him safe, who knows what lays ahead?
Chapter 2 to come……….