Pogorevici Nichita, 1 year

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Children are an unlimited joy and dream of every person. My husband and I dreamt of it, but the dream didn’t come true for a long period of time. Over five years we were hoping to thrill… The miracle happened. The days full of immense happiness flowed in expectation of our baby-boy Nikita.
December 2, 2011 on the 33 week of pregnancy was born a tiny baby – Nikita Pogorevich, weight 1,330 gr, length 39 cm; and with a diagnosis of cheiloschisis of upper right lip.

Annoyance, pain, fear filled our hearts and it seemed that no one except mom and dad believed in his viability. But our sonny appeared to be tough, very demanding, with a great thirst for life. It was a surprise for doctors that he was able to eat from a bottle, without help of probe. We were so happy! We thought it was not a problem that he was small; we would raise him, grow him up, and would do anything for him.
By the end of the 1st month we were discharged from the hospital with jaundice syndrome, colorless feces, it was explained by the jaundice of premature, we passed a thorough examination – nothing serious was revealed.
During the month of jaundice was growing. We were hospitalized and the suffering of our baby began: the endless tests, IVs, injections, transferring from one department to another in attempts to define the correct diagnosis. Nikita was so tiny at the age of 2 months he weighed 2 kg. The diagnosis was biliary atresia. Sounded as a sentence! No one can help; such children are considered to be hopeless in our country. We were said: “Only three months and that’s all, such children do not live longer.” That’s all.
During the month of suffering, our son didn’t gain a single gram, analyses deteriorated rapidly, his condition became critical, he was constantly crying, at the age of 3 months he understood who approached him and for what reason and tried to hide. The moment came when it seemed that life was over, and only the baby’s crying forced to live: there he was alive, own and asked for help. But how could we help? Where to go? We didn’t know. Our doctors told us that no one could help…

We went to Filatov clinic. Biliary atresia was not confirmed, medics suggested Alagille syndrome. We received treatment. The child’s condition started improving rapidly: bilirubin, transaminases decreased, baby started gaining weight. There was hope; hope that everything will be fine, our boy, our sun will recover. We left the clinic with a diagnosis of «syndrome of cholestasis. Dif. diagnosis between perinatal sclerosing cholangitis and metabolic disorders.” and started conservative treatment. During the year, the state of Nikita was stable, analyses gradually improved, our hope grew stronger. We wanted the miracle to happen, his jaundice and unbearable itching to disappear. But the miracle did not happen … After one year the child’s condition was rapidly deteriorating.

March 7 we were hospitalized in critical condition with hemorrhagic syndrome, ascites. We spent a week in the intensive care department where no one, except his parents believed in child’s powers. We knew that he could, he would get out and would give us another chance to save him. And this chance is the liver transplantation. Now our condition is stable again, but no one knows for how long it will last. Nikita is waiting for the adults to do something and he will no longer be ill. To get rid of this horrible itching, this makes him wake up at night every 30 minutes. He wakes up and cries, mommy is near, she will lull, she will scratch, but even in his dream he is constantly scratching his legs, stomach, ears until they start bleeding.
In our country, such operations are not carried out. One of the clinics, where the doctors transplant organs to such small children is a Belgian hospital of Saint-Luc. But this is an expensive operation, we will not overpower it. The cost of the operation is 97 000 EUR. Therefore, we appeal to the whole world. Help us to save this tiny baby, we would be grateful for any help: organizational, informational, financial … Hasn’t our baby deserved to live, just to live without pain and trial, because he had already passed through so many torments during his short life. But this is the childhood, and it should be happy…

Diagnosis: Cirrhosis. Hepatic insufficiency
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