The disease that doctors have just heard of was treated in Eskişehir
Living in Izmir, 45-year-old Nuriye and Adem Şahin, who have 3 children, 2 of whom are girls, had a son with Apert syndrome, Umut Aras Şahin, 4, was born with his fingers fused together. The child, whose fingers on both hands are closed into fists, has difficulty in his daily life. Wanting to have his condition treated, which is seen in 1 in 160,000 births, the Şahin family visited many hospitals and met with doctors for treatment.
ALL 10 FINGERS WERE OPENED WITH THE OPERATIONThe family, who received answers from many doctors that they had not even heard of the disease, could not find a cure for their son. Nuriye and Adem Şahin, who discovered the success of Eskişehir City Hospital after long research, came to the city for treatment. The couple made an appointment with Eskişehir City Hospital Plastic, Reconstructive and Aesthetic Surgery Specialist Op. Dr. Abdülkadir Calavul for treatment. As a result of the examinations, the family was informed that Umut Aras Şahin's hands would be operated on. Shortly after, the little boy was laid on the operating table and 10 fingers were opened with the operation. A similar operation was performed on other children with the same syndrome who were treated at the hospital.
As a result of the treatment, 4-year-old Umut, who actively uses his fingers, can now do many things on his own, from holding a spoon to opening a door. The child and the Şahin family, who were upset in the past due to the negative and exclusionary behaviors of his peers, have smiled. The illness, whose name the doctors learned from the family in the previous hospitals they went to, was thus largely treated in Eskişehir.
"When doctors say 'Apert', they ask 'what kind of disease is this?'"
The mother of 4-year-old Umut Aras Şahin, 45-year-old Nuriye Şahin said, "The doctors who perform these surgeries very well are usually in private hospitals. When we find them in the state, when we go, it is very difficult to get a number or something like that. My son's hands were in the shape of a fist. In other words, there were no fingers or anything. We have a group. We have a group that we formed among ourselves, where we research and learn about this disease, guide each other, and direct each other by saying this doctor is good. For example, Umut's situation was the most difficult. Our son's hand was the most difficult in the group. There were those who suggested that there was no chance of 10 fingers growing, let's open two fingers. They said, 'He will meet his needs' and so on. But this made me very sad as a mother. Because why shouldn't my child have ten fingers? Some doctors are not knowledgeable about this, in other words, they don't know about this disease. When we say 'Apert', they ask 'what kind of disease is this'. There are those who don't know. Because it is a very rare disease. We can't make our voices heard either. Some diseases have associations, etc., we don't have such an association "There is no such thing," he said.
"MY SON IS A VERY DETERMINED CHILD"Şahin continued his words as follows: "Umut needs to have a midface surgery right now. I have friends who have done it, they say they want two or three million. That is, the price of a house. I wonder how I will come up with a figure that can buy a house. Umut has had 10 surgeries so far, including middle ear surgery and tube placement. There is one last surgery left, extensions. Our bones are short. We don't have joints in our hands, there is no solution for this right now. Technology will develop in the future and hopefully a solution will be found for that too. But thanks to Kadir Hoca, for example, he can eat, hold his spoon, open a door, turn on the tap, and pull a zipper. The only thing he can't do right now is button up. That is because of his age. I believe he will do that in the future. My son is a very determined child. In that respect, I am very happy to have such a child. I am glad he came into my life. People may look at him differently, but for me, he is the most beautiful child in the world."
Şahin, who said that they were very upset when people looked at Umut differently, said, "I know that I came back crying. I also know the times when my child said, 'Why do people look at me like that?' I also know the times when he said, 'They are afraid of me and run away from me.' As a society, my expectation from people is; raise your children to be compassionate people. We are really going through very difficult things. At least make this job easier, help us. Raise their children well, explain them, let their children be loving. Let them be conscious as parents. Because children are innocent, I am not angry with them. But these are the duties of parents. Let there be no cruel children. Let them raise good people for society."
Mother Şahin said, "I hope Umut will be a reason for other children. Because I believe that they can really reach good places with good doctors and I saw that in Umut. I know that he will be hope for them too. That's why I named him Umut."
IT IS SEEN 1 IN 100 THOUSANDPlastic, Reconstructive and Aesthetic Surgery Specialist Op. Dr. Abdülkadir Calavul said, "Our child Umut was born with a disease we call Apert Syndrome. In Apert syndrome, especially the hands of the patients are closed. In other words, the whole hand is a single finger, all the fingers are fused. Families go to many hospitals to have these fingers spread. However, since this is a difficult surgery, many doctors do not dare to perform this surgery. This disease is seen at a rate of approximately one in a hundred thousand. In other words, it is a very rare disease. It is a genetic disease that can generally be seen without consanguineous marriage. Therefore, the exact diagnosis of the patient is clarified with genetic tests. However, the reason for applying to us is usually to have their hands spread. The patient's fingers were fused. We had previously spread his fingers. Now we have corrected the remaining fused parts of the patient. There were recessions between the fingers, we corrected them as well. We brought the patient to this state with approximately five surgeries. Previously, he had a single finger appearance in each hand. Currently, he has a total of 10 fingers in both hands and can partially meet his personal needs. In the future, the ability to meet these needs will increase with the physical therapy process. "Hopefully. Our patient is currently 4 years old. We will take bone from the hip and add bone to his short fingers and lengthen his fingers. Then he will have a more normal appearance," he said.
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