Saturday, 12 November 2022

Boris - Living with Emanuel Syndrome



Boris




Boris was born full term by section and we didn't realize anything was wrong until he refused to eat and his cleft palate was noticed. A day later he was rushed for life-saving surgery as it was found he has an imperforate anus. It was the longest and scariest day in my life, but he made it. 

We spent two months in the hospital and together with the palate he was also diagnosed with PFO, micrognathia, stridor post-intubation, airway abnormalities, duplex kidneys, and undescended testicles. A month after his birth he was diagnosed with Emanuel syndrome which explained everything. Last year Boris was admitted to the hospital once to have his peg placed as he is entirely fed by it and we are waiting for three surgeries in near future. He is currently one year and three months old and can't roll or sit independently but he smiles daily and brightens our lives.

-Mom




No comments:

Post a Comment

Being Thankful and Grateful for the Hard Times Gets You Through It

    We all experience deep hurts and things in life that are hard to get past. I have learned so much about thankfulness every day to be in ...