22ndJuly 2016 – on that day our son Ignaś was only one week old. When he was born he weighed 3980g. He was 58 cm long and he got 10 points on Apgar scale. Nothing pointed out that something was wrong. However, during the first day of his life, a serious heart defect was detected - a complete abnormal flow of pulmonary veins to the heart.
The heart was opereted on, but the doctors are constantly trying to determine the cause of cholestasis, which drives his liver to cirrhosis. The magnetic resonance image suggests a metabolic disease with a complete lack of white-matter myelinization and encephalatrophy. We still don't know what kind of metabolic disease it is and what is going to happen... Our son grows much slower – he still does not hold his head straight, doesn't grab objects and he doesn't sit. He has esotropia and barley follows the objects. He suffers from epilepsy and childhood cerebral palsy. He is short of weight – he eats very little and he often has the food stagantion, which causes vomiting.
His every smile is priceless but it happens very seldom.....
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