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 pointson Apgar scale. Nothing pointed out that something was wrong. However, during the firstday of his life, a serious heart defect was detected – a completeabnormal flow of pulmonary veins to the heart.
The heart was operetedon, but the doctors are constantly trying to determine the cause ofcholestasis, which drives his liver to cirrhosis. The magneticresonance image suggests a metabolic disease with a complete lack ofwhite-matter myelinization and encephalatrophy. We still don’t knowwhat 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 doen’t sit. He has esotropia and barleyfollows the objects. He suffers from epilepsy and childhood cerebral palsy. He is short ofweight – he eats very little and he often has the food stagantion, which causes vomiting.
His every smile is pricelessbut it happens very seldom…..