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Nicholas, COA, 2002

Nicholas, born 2002

Our miracle child, Nicholas, was born on August 9, 2002. Several months earlier, he was diagnosed in utero with hypoplastic left heart syndrome (HLHS), bilateral cleft lip and palate, small long bones, and possible kidney failure. To our surprise, Nicholas entered the world a month early and with the exception of his cleft lip and palate, everything else he was diagnosed in utero had changed.


The original diagnosis of HLHS had changed to Complex Coarctation. He left ventricle was the same length but not the same width. We were told they were going to proceed with the Norwood and treat him as HLHS but two days later the doctors decided to repair just the coarctation in the hopes his left ventricle would grow. So, at the age of 6 days old, he had his first open heart surgery and came through with flyer colors. And, after several tests, they determined Nicholas did not have any problems with his bones and his kidneys were just fine.


The past two years have been an emotional roller coaster as we have experienced some of the worst things in life but we have also been blessed with the best kind of miracle. Every day our son wakes up with a big smile on his face, gives us a big hug and a big wet kiss and we realize how lucky we are and how incredible he is! So hard to believe this is the same child who was given such a dismal prognosis!


Story by Nicholas' mom, Carrie - New Jersey

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