Seryozhka

Seryozhka

This story begins on 3 October 1997 in a small northern town when her firstborn child appeared on the earth—a son. She and her husband anxiously awaited his birth, made plans, and dreamed about what he would become. But the first sign of trouble burst out with the child’s first scream. The doctors firmly gave their verdict without doubt: he suffered from anophtalmia (lack of an eyeball) in one eye and an underdeveloped frontal lobe in the brain. This meant that the child would have no future—if not complete retardation, then certainly a progressive, developmental lag. One “compassionate” doctor advised the young mother, “Why keep him? You’re young. You’ll give birth again.” But she pressed him against her chest and, still not understanding what the future would hold for them, brought him home. They named their son Seryozhka. When the child was two weeks old, she and her husband were met with their first surprise. Seryozhka actively responded to everything around him, was noisy, cried, and required attention. Basically, he was like any other child. And they began to hope that the doctors had been mistaken. The lack of an eye didn’t scare them; they could put in a prosthetic. But there soon appeared more trouble. By the third week, two blotches appeared on the cheek under Seryozhka’s eye that looked like birthmarks or moles. Within a week the marks grew to the size of coins. When Seryozhka was two months old, his whole left cheek became a continuous bruised area. The diagnosis: hemangioma.

At that exact point in time, my destiny became intertwined with theirs. The first thing that came to mind was that we needed to take Seryozhka to Ernst Muldashev at the Russian Center for Eye Plastic Surgery. I had faith that they would think of something to help. But getting him there would be difficult; we didn’t have a doctor’s referral for the center or a prior agreement with the clinic. We just knew that we had to do something. But my hope came true—at the clinic they decided to take out the hemangioma and make a prosthetic. The operation lasted six hours. During the operation it became clear that instead of an eye he had a tumor. But it wasn’t a problem—the tumor was benign. They performed plastic surgery on his face. But most importantly, we needed to find out if Seryozhka was in danger of being mentally handicapped. After appointments with the neurosurgeon and the psychotherapists, they came to this conclusion: “He will never be an astronaut, but otherwise, he’s as healthy as any other child.”

And thus began the humdrum life of a small boy. He grew quickly and started to talk and walk early. Once a year he and his mom traveled to the clinic, where they regularly performed plastic surgery and replaced his prosthetic eye. It appeared that everything was great and that the prognosis of the local “stars of medicine” was incorrect. Mom was always around, dedicating all her time to Seryozhka. But only I know what it cost her to endure the unprofessionalism of the local doctors, their heartlessness, and most importantly, their abominably incorrect behavior when they should have written a referral for the operation at the clinic. But she survived it all. She and I talked for a long time in the evenings, and I was constantly trying to convince her to have Seryozhka study English and music, and that he’s a talented child. I was sure that if God would deprive someone of proper physical development, He would certainly make up for it with unusual talent. Seryozhka is now eleven years old. He’s inquisitive and very active. He studies English, attends musical school, and is a great student; but most importantly, he’s not ashamed of his outward appearance. Although there are sometimes conflicts—children will tease—Seryozhka has learned to live with it and doesn’t feel “different” amongst his peers. Yes, he will likely have countless more plastic surgeries, each one causing him terrible pain and causing his mother unbearable suffering for her child’s suffering, but they are together and they have made null and void the verdict of the so-called “doctors.”

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Слепцова Айсена/Sleptsova Aisena

Слепцова Айсена/Sleptsova Aisena

Диагноз: Двусторонняя врожденная аномалия развития наружного и среднего уха (микротия средней степени/атрезия полная). Двусторонняя кондуктивная тугоухость II-III ст.

Diagnosis: bilateral congenital abnormity of development of outer and middle ear (microtia of the 3rd degree, atresia). Bilateral conductive hearing loss of the 2nd — 3rd degree.

Карапетян Сюзанна/Karapetyan Sjuzanna

Карапетян Сюзанна/Karapetyan Sjuzanna

Диагноз: Дефект межжелудочковой перегородки

Diagnosis: Defect of the interventricular septum.

Коваленко Максим/Kovalenko Maksim

Коваленко Максим/Kovalenko Maksim

Диагноз: Двусторонняя сенсоневральная глухота на оба уха, состояние после операции кохлеарной имплантации в апреле 2010г.

Diagnosis: bilateral sensorineural deafness, condition after cochlear implantation in April 2010

Other children

Алесич Елена\Alesich Elena

Алесич Елена\Alesich Elena

Диагноз: Диспластический грудной правосторонний сколиоз 4 ст.

Минеева Марина

Минеева Марина

Диагноз: Диспластический грудной сколиоз 3 ст.

Other children