Nicholas’s Story

Nicholas was born full term and his mother had no complications.  It wasn’t until the time of delivery when his heart rate spiked from 150-260.  Within one hour of being born, Nicholas was trauma hawked to Joe DiMaggio Children's Hospital and seen by their cardiac team and surgeon.  He was diagnosed with Wolff Parkinson White Syndrome which is an extremely dangerous heart rhythm disorder and Ebstein’s Anomaly.  

Ebstein’s Anomaly (EA) is a displacement of the tricuspid valve and in his case the valve was displaced so low that the right chamber was not pushing blood through to his lungs and his PFO wouldn’t close. This in turn created significantly lower oxygen levels for his first year of life.  His medical team closed the PFO when he was eleven months old but this caused Nicholas’ heart to enlarge greatly causing heart failure on multiple occasions. He has had about five catheterizations and during one, he suffered a stroke which left him with hemiparesis on his left side. Prior to his stroke he was predominately left handed.

Nicholas underwent open heart surgery at 22 months old.  His heart is doing great but he still struggles with his left side and requires a Benik hand splint with supinator strap.  He doesn’t know how compromised his left side really is and is very clumsy and prone to falling.  Though he struggles with the left side of his body, he is making progress through many therapies.  Nicholas loves to play on the playground with his friends and loves going for swim therapy.  


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