Diagnosis of the child
Goldenhar syndrome: atresia of the external auditory canal and auricle
Goldenhar syndrome is a hereditary disease in which most often pronounced unilateral hypoplasia of the face, abnormal ears, eyelids, teeth, spine, etc.
Purpose of Fund-raising
reconstruction of the auricles and the establishment of a hearing aid
The story of a child
Daniil Karpovich is a special boy. Such are born, as they say, one in a million. Have 3-year – old Danika syndrome Goldenhar-this means, that almost there is no ear, deformed cheek and jaw.
"During pregnancy, I did ultrasound many times, and no one noticed at least the slightest illness of my son. Of course, my husband and I were not ready for the birth of a special child, — says Danila's mother, — although no one is ready for this, to be honest."
At that time Olga was 20 years old, and her husband, Andrew, is 23 years. Young parents learned about the peculiarities of their son only during childbirth.
"Danik was born with a small lower jaw, in the mouth in the sky found a bilateral cleft. But the most shocking was that he had no ear canals and ears (the ears is a little strange appendages). These seven days in the hospital were the worst in my life."
To abandon the child, no one even thought was not. Andrew was very supportive of his wife, slept in the car to the hospital, while their son was in intensive care…
"After the hospital, we were transferred to children's hospital of Pinsk, and from there to Minsk in the Republican center "Mother and Child". There we passed all examinations, and in addition to everything it was revealed that Danik doesn't have enough two cervical vertebrae, the thorax is a little deformed and there are the fused edges".
From birth Danilo was fed through a tube, as due to the underdevelopment of the jaw and cleft to eat, he could not. And only a month and a half together with my mother he was discharged. Five months Olga and Andrey in turn fed the son through the probe, but the house was somehow easier: at home the walls help. Then they taught Danica to drink from bottles, even pacifiers improvised did.
"They began to be observed in the Center of otorhinolaryngology in Minsk. There we were given a second degree of hearing loss. For a start, we bought a pocket hearing aid, bone conduction, and Danik began to hear this world as a normal child. And in two years, the state gave us Bach's hearing aid."
The first goal, that set before a parents, was get rid of cleft the sky. And it was not easy. There were problems with intubation in anesthesia because of the short neck. The operation was done three times: in October of 2016 Danica had a plastic surgery of the soft palate. The next operation was planned for September 2017, but it had to be postponed to March this year, as the boy began to get sick often.
The endless search has led parents of Daniel to the doctors who not only make the plastic of the tabs, but even some of the children open the ear canal.
"In the spring of 2016, we went to a conference with doctors Reynish and Robertson. The conference was held in Moscow, with a need to have a CT scan of the temporal bones. There's American doctors gave Danica a diagnosis of "syndrome Goldenhar". In our case, unfortunately, it is impossible to open the passage, but you can make the plastic of the ears and implant the hearing aid."
Belarusian doctors offer restoration of the ears with the help of rib cartilage. But it's several stages of complex operations, which do not earlier than seven years, and in the case of Danica and even later. Another option that offers our doctors: silicone ears, which are very different from the present.
Back in 1991, American doctors came up with a method of restoring the ears with the help of the material "medpor", which is covered with the skin of the child and does not differ from this ear. The first ear can be done in five years, the second — in half a year. All he required two operations.
"Of course, the amount for such an operation is unaffordable for our family. That's why we turned TO the unihelp charity Fund, which agreed to help us. Could not believe my luck when I heard it! We want to operate at Reynish, as he is the founder of this technique. I know some families from Russia who have already made their ears and are very happy with the result. This doctor has only two students who also work in America. All others simply copy, but here I am not sure that there will be a good result, and it is even more difficult to operate, — Olga tells.»
Danik is not developing worse than healthy children in two years, already knew all the letters of the alphabet and colors. Able thinks, likes to sing and dance. Now the boy is 3.6 years, says it all, just not all clear due to the crevices. Goes to regular kindergarten with healthy babies and it is not complex. Danica's dream is to make ears to school! And we believe that he will succeed!