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.jpg) Dr. Marcelo Hochman |
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From the father’s writings;
Batuhan, whom we refer as “miracle” was born in 3.10.1998 with teeth in his mouth and a mark on the right side of his face. The doctor who attended to birth operation called for me and told me we’d have a lot of difficulties because of batuhan’s face and the curing process would be financally difficult for us. We brought Batuhan home. Then as the doctor directed me, I took my son to Prof. Dr. Mine Çalýþkan who was working in the child neurology department of Çapa Tip Fakultesi, which is a university hopital. In the mean time, extensive bleeding started on batuhan’s nose and bloating appeared on his face that rapidly renewed itself everyday. The eye on the right side of his face which had Hemangioma, was closed due to bloating. The bloating on Batuhan's face was preventing him to live his babyhood. Because his face was hanging down, he wasn’t able to lift his head or crawl and he was being fed via injection syringe while lying, because he wasn’t able to sit. Seeing him like this was hurting family members deep inside. Everybody, even while having the least of hopes, was eagerly expecting the day that he would eat his own food sitting and without getting help from anybody else, that he would run and play like other kids and that he would get to his most beloved toy by walking. The skin of his face got fairly thinner due to frequent bloating and that was causing bleedings. In order to stop these bleedings and the bloating on his face and to prevent the scars on his face getting infected, he was put in the Haematology ward in Çapa Tip Fakultesi. There he was medicated with interferon for 25 days and with cortisone for 3 days. After getting no results from the treatment, doctors told us “We did everything that we could. Batuhan’s condition doesn’t promise any improvements. You must free the bed for the treatment of kids better than Batuhan”. We were told “Do not struggle too much for this kid, let him to his faith and take him home”. Just like every father, I too was persistent to make my son live. But two doctors working in that service, Dr. Sema Yumak and two more female doctors told me “Of course it’s your son and you can’t accept it. But get your son and free the bed”. I took my son, leaving the hospital helplessly. Prof.Dr.Mine Çalýþkan diagnosed Batuhan with Sturge Weber syndrome. Everyday I was providing Batuhan with half a tablet of that medicine, which could be bought with the green prescription. Later, I found Prof. Dr. Selçuk Apak’s, who was the teacher of Prof. Dr. Mine Çalýþkan, clinic in Niþantaþý. I took Batuhan’s MR results and diagnostics with me and went to his clinic. He first medically examined Batuhan. Then examined the MR results and told Batuhan’s illness hadn’t been Sturge Weber, but Cavernous Hemangioma. With regard to his own assitant, Prof. Dr. Mine Çalýþkan, he told us “How many times had Ms./Mrs. Çalýþkan seen such a case in her life so she diagnosed this way? The diagnosis Ms./Mrs. Çalýþkan had come up with, is completely wrong”. He explained us “Treatment of this illness by laser is possible. Take him to a laser operating clinic”. We went to International Hospital, leaving the clinic, for Batuhan’s laser operation. And only pictures of Batuhan was taken there too, and we were told “There’s no appropriate laser here for this. We can’t intervene with this illness”. With the same remediless situation, we took Batuhan home. I inspected every Plastic Surgeon I saw on the tv in that time. We went to Dr.Muzaffer Çelik’s clinic in Levent. Muzaffer Çelik too, only took pictures of Batuhan and told us “Nothing can be done for this kid. Don’t have high expectations”. He too closed his door to us. Because his face was floating rapidly and the swelling on his nose was making pressure, Batuhan was having breathing problems in that period. In addition, because he was always crying with the reason of not being able the bear the pain, a large hernia occurred on his groin. We had him operated in Çapa Tip Fakultesi. We slept at the hospital for one night and then discharged from there. When we had arrived home, Batuhan became aggravated. Infections had occurred on his face and on the wounds of the surgery. Again, we went to Çapa Tip Fakultesi. But because the hospital had no free beds, they told us they couldn’t help him and then we had to return. We took Batuhan to Bakýrköy Child Hospital. They gave us a bed because of the wounds on his face and he was treated there for ten days. That hospital directed us to Cerrahpasa Tip Fakultesi. We went to plastic surgery professor’s clinic in Cerrahpasa Tip Fakultesi. That doctor put Batuhan in Cerrahpasa Plastic Surgery service. And he gave Batuhan’s full responsibility to Dr. Akýn Yücel. By Dr. Akýn Yücel and a doctor from Radiology departmant in Cerrahpasa hospital, Civan Islak, medication was injected to Batuhan’s facial veins three times by penetrating from his groin. Mr. Yücel did everything he could and told that was all he could do for the boy. We returned home again, taking Batuhan with us. In the mean time, the bloating on his face had grown rapidly, his right cheek was overhanging to his chest and wounds occurred on it because the skin had become thin. One evening, there had been an extreme bleeding on Batuhan’s face and blood gushed from the wounds. We took him to Cerrahpasa hospital’s emergency service. They completely bandaged his face beginning from the skull and put tampon on his face. And they told us “The next time bleeding occurs, you also can apply the tampon. You don’t need to come here every time, we do the same thing here. Do not open this bandage for fifteen days, then come to the hospital again”. When Batuhan had that bleeding, it was August. We came home. It’d been a week after the bleeding happened and Batuhan’s face was still in bondage. Because of hot weather and the bloody wounds couldn’t get air and also because of the negligence of the doctors, there began some scent coming from his face. I opened the bandage. The sides of the wounds had gotten whitened and wounds were filled with small maggots. I washed his face with soapy water, cleaned with physiological serum then cleaned the maggots from my son’s face by applying batticon. During that period, we took tim to plastic surgeons whose names we learned by. But all of them had the same conclusion. They were retreating with the fear of Batuhan’s death on their hands. One of them, famous plastic surgeon and the owner of Onep, Onur Erol had just seen Batuhan and told us “May Allah help you. There’s nothing to do”. And he didn’t even ask for a diagnosis fee. He too, like other doctors did, took his pictures. Again, we were standing in the middle of nowhere without remedy. Just the next day, I found a doctor who was a brain surgeon. That doctor sent us to Sisli Etfal Hospital’s plastic surgeons. And the day we went to the hospital, every plastic surgeons and the teachers of the hospital on the committee saw Batuhan. The committee just examined Batuhan and later the doctors called for us. We weren’t unfamiliar to the things we heard there. They said “There’s nothing we can do”. Within the same remediless situation, we left the room. While we were walking at the corridor, some female intern by coming near, told us “I know a doctor who can help you, visit him if you want, it would be if he’d also seen Batuhan”. She told the doctor’s name was Bahattin Çeliköz and that he had a clinic in Kýzýlay square in Ankara. When we left the hospital, we had a new hope because of the intern doctor’s self-assuring speech. We were living in Istanbul, but the doctor was in Ankara. One morning, we took Batuhan to the doctor’s clinic in Ankara. That doctor was also working in GATA hospital. We told our situation to the doctor. We explained that we had no money left, sold our house, car and that we were living in a rental house under difficult conditions. Doctor understood us well and told us “I have nothing to do with your money, if you have social security then arrange a forwarding for the papers from Istanbul to Ankara. I’ll do his laser operation at the hospital”. He made three laser sessions with Batuhan in GATA, Ankara. After those laser operations, Batuhan’s bloated face slowly began to shrink. When he was in a situation in which he could carry his own head, he could sit. That brought a new happiness to our family. We all were observing in awe, the changes that Batuhan had in each passing day. Not long after that, our doctor was assigned to GATA in Istanbul. He told us there had been no laser equipment in that GATA hospital. Batuhan had five mode laser operations in JFK Hospital in Bahcelievler. But since that hospital was a private one, I spent all my resources till the end. And those laser operations have only been able to shrink the swelling on his face. We were in need of a good plastic surgeon. Once again we were in search for plastic surgery. When the swelling on his face got smaller, his facial skin became overhanging. We take our kid to Dr. Özhan Çelebiler, who was the plastic surgeon in Marmara University. He sent Batuhan to an oculist at the same hospital. Because his eye was closed due to Hemangioma, he had lost %60 of his seeing ability. But the doctor in Marmara University gave us a report as the eye had no vision at all after examination. Based on Marmara University’s plastic surgeons’ decision, a committee was established and that committee inluded doctors from other branches as well. The conclusion was; “There’s nothing that could be done for Batuhan. He might die of possible bleeding during the operation. We can’t take that risk”, they told us. After a short period of happiness, we were remediless again. In the mean time, Batuhan was growing older and he too wanted to attend to school after seeing the other kids. When my son was 6, I tried some private kindergarten. But I got rejection from all of them. His enthusiastic behavior was making us happy but the schools giving him no chance were hurting us deep inside. As a last resort, I contacted to principal of pre-elemantry class in Þükran Ülgezen Anadolu Meslek high school, of which our daughter was a student. On the phone, they told us to visit them. I took my son to the school. At first day, he met with his friends. Some kids found his face strange. The first day was well. Batuhan was too happy because he would go to school the next day. He went to school with his mother. After an hour they’d told “You can take your kid to home”, because on that day one of the kids had birthday party and that kid hadn’t want Batuhan in the party. So his mother brought him home. That thay, on the way home Batuhan had asked his mother “Mom, why didn’t they accept me to the ‘happy birhtday’ ?” Of course his mother had to lie for his happiness. The next day they called home and asked Batuhan to be present at the school, so Batuhan went to school with his mother again. They told my wife that some of the kids had been scared of Batuhan and some families had called the school telling “If Batuhan comes, we’re not sending our children”. So my wife had asked to contact with the family that had told those things, but they hadn’t let her. Then they’d packed and returned home. When Batuhan asked me “Why am I not going to school?” I told him “It’s cold out there and snowy and the teachers don’t want us to get cold so they made it a day off”. I though I had made my sone believe in that lie. But one night, when I put him to his bed, he asked again “When will I go to school?”. And I told him “The weather is cold, when it becomes warm, you will”. Batuhan turned his face to me and said “They don’t want me in the school, I know”. I was puzzled, I asked “Why wouldn’t they, my boy?”. And my son said “Because they’re afraid of my face”. A year passed by. Batuhan was in the age of school. We went to National Education Directorate in order to not to have the same problems again. After seeing Batuhan and listening to what problems we had, he justified and agreed, but he told us he couldn’t help us aside from assigning him to a public school. And since we hadn’t the financial resources, I couldn’t have my son attend to a private school. He started in the public school. The class consisted of 40 pupils and the teacher in no way could pay attention to every one of them. Batuhan was having problems in that crowded school all the time, kids were making fun of his face. We had problems since his first day in the elemantary school. Some parents were telling that their children had been afraid. They always excluded our son. The kids were making fun of him and pushing him so he was falling to the ground all the time, Batuhan was getting angry with them but even after that he was standing and going to chat with them in order to become friends. He was accepting them with their misbehaviors. In the mean time, I came together with a frind who was building Web pages and we designed a Web page for Batuhan. And we sent e-mails to world’s health organizations. Plastic surgeons from 7 different countries replied our e-mails. They asked Batuhan’s CDs. Then I made Batuhan’s face diagnosed with MR and sent the results to the doctors. All the doctors, except Dr.Mrc.Hockman retreated. Dr.Mrc.Hockman told that he could do that surgery. After Patrisya duveyt, who came to Turkey and saw us, informed the doctor with the required details, we went to U.S. embassy and got our visas. And we were sent the flight tickets along with the travelling miles points that which had been collected in the U.S. With a new hope and excitement, we bagan our travel. In the first operation he had in the U.S. some part from the back of his ear was obtained and with that part, his nose, eye and lips were made. Being very satisfied with the changes on his face, Batuhan, after returning to Turkey, was looking forward for the next day he would be in surgery in the U.S. And after 6 months, Batuhan was called for the surgery again, the overhanging skins on his face were handled in that operation. He had 6 operations until now. But we waited for 2 years between the 5th and the 6th operation. Because those operations had required too much money, and beginning with Batuhan the Hemangioma foundation also had helped approximately 200 helpless children,who had no financial resources. The president of the foundation, Jane Milner did all in her power to arrange the 6th operation. In that operation, the part taken from Batuhan’s back was transplanted on his face. That operation, which took almost 8 hours, was a great success. Our doctor told us that Batuhan would have 2 or 3 more operations and that monetary support was needed. Our doctor had no financial expectations from those operations. On every occasion, they mention that they love Batuhan as if their own children and they’re doing their best to give Batuhan his social life. And we too aggree with Batuhan, that our doctor will give us the day we hope, the day that we dream of. Batuhan believes in that so much that when he’s by the doctor, he becomes so happy. He doesn’t move without consulting his doctor first, even he doesn’t get on his most beloved scooter without doctor’s approval. In the name of my son and my familiy, I’d like to thank to Dr. Marcelo Hochman, who contributed a lot in the actions that made my son to be in that situation, to the president of the foundation Jane Milner and to all members of the foundation. Let’s all help the Hemangioma foundation, and donate according to our own financial budgets, without considering the donation’s amount would be small or large. Because none of those donations are going in vain. Let’s hold our hands together in order to make these children smile, helping them to join the community. When you open Batuhan’s Web page, you’ll see what was being done with your donations and find that those donations do not go in vain. www.batuhanitku.net
Batuhan himself is very satisfied with that change, and his trust in his family and people who love him is endless. Because he knows that; his family or people who love him never leaves him alone and in a remediless situation.
His father, Levent Ýtkü