Nicholas, born 1999My son is truly an inspiration. But if anyone told me that he would be such a happy, healthy child, living a normal life as he does today, I would have had trouble believing it.
When I was five months pregnant, a routine fetal ultrasound failed to reveal a fully developed right ventricle. We went to a pediatric cardiologist and learned that Nicholas would be born with Pulmonary Atresia. Incredibly discourage, but hopeful, we learned that this was a condition that could be repaired, and that he could lead a normal life. During the months that followed, we educated ourselves about the condition, and met with his surgeon and had a plan in place.
On November 5, 1999, Nicholas was born at Newark Beth Israel Medical Center. He was 6lbs, 15oz, and was just perfect. For the first few days, we were able to hold him, feed him, and change his diapers. I never left his side. Then, three days later, he had his first surgery - the BT Shunt. He did great and ten days later we took him home. Other than our being extra careful and lots of doctor visits, Nicholas ate and few well, and never missed a developmental milestone.
Nicholas had his Hemi-Fontan at four and a half months of age. He was hospitalized for two weeks due to pleural effusions but recovered well back to a normal routine. We even enrolled him in day care part time at 15 months of age. He loved being around other kids. He walked early, started talking right on track and we were so proud. Since his Hemi-Fontan, he had a balloon angioplasty to dilate the pulmonary artery but that was seemingly minor in contrast to open heart surgery.
When he went for the Fontan, it was most difficult for us. But at 22 months, Nicholas was now a little man, able to express himself, and it was really difficult to bring him in. After three weeks hospitalized, he was home!
He follows with his cardiologist once a year. In fact, during his most recent visit, we learned that Nicholas' heart function is "excellent" and his pulmonary artery is showing significant flow, almost as though there was no problem!
Nicholas lives his life just like every other active child his age, running around, playing ball, enjoying life to the fullest. He started Kindergarten in September 2005 and we couldn't be more proud. The teacher has even commented that his intelligence at this age is "above average". We feel so lucky.
Nicholas knows that he has a scar where the doctor fixed his heart. He even knows he had surgery. He knows that the medication he takes himself, is for his heart - to keep it strong. But this doesn't keep him down. He wants to be a baseball playing, loves soccer and hockey, and riding his Quad. He is more athletic than most kids on our block! Like I said - I never would have believed it!
Story by Nicholas' mom, Jodi - New Jersey
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