Written by chris legary
Sunday, 18 October 2009 11:44
December 29, 2001 was the day my oldest nephew was born. He came into this world not as the usual pink crying very upset baby but as a blue non-crying barely moving baby. That was one of the scariest days of my life. As I stood in the delivery room watching as they tried to get him to breath and show signs of reflex my heart was breaking.
What was wrong with him? Why is he blue? Why does he need oxygen? Why isn't he crying? Is he ok? All I wanted to do was make things better, especially for my sister. Inside I was screaming.
Finally! He cries, a sad small wimper that was barely audible. But he's is breathing, had been all along it was just so shallow it was hard to see. But he's still blue and refuses to make any more noise. Minutes turn into hours and he is still blue so he gets moved to isolation. No one will speculate what could be wrong with him.
He was born in the morning and that night the hospital decides that he needs to be moved to the Neonatal Intensive Care Unit (NICU) at the childrens hospital. At barely 12 hours old he was taken from my sister and moved to another hospital. She wasn't allowed to go with hiim as there was complications from the delivery.
I went with him to his new hospital bed where he was hooked up to heart monitors, breathing machines and a constant IV in the back of his tiny hand. No one was allowed to touch him because it could be an infection.
Days later and many intrusive tests later it was determined that he was missing one of the four parts of his heart!!!! WHAT???? How was that not detected prior to delivery? What happens now? What kind of life is he going to have? How long is he going to live? Those were just some of the first questions to be posed to the doctors.
At 10 days old he was flown from our city to Edmonton for open heart surgery. At 12 days old he recieved the surgery that was only going to keep him alive for the next 6 months. The doctors said he would be in the hospital in Edmonton for about a month, then another month in the NICU back home. Well he surprised everyone. After 3 weeks he was allowed to not only return to our city but to go home. He had never been anywhere other than a hospital bed and he was now over a month old. It was a happy day when he came home. But the fear of what was going to happen in 6 months played in the back of all of our minds.
The time flew by and he grew and got stronger. He was still blue around the mouth as well as his fingers and toes but that didn't stop him. He crawled earlier than most babies despite the doctors saying he would be delayed in his development. He then started to pull himself up on things around the house, again ahead of schedule. Time kept going and he kept amazing all of us. He was a constantly happy baby.
At about 7 months of age he went into heart failure.
He was taken in for a heart cath. And heart failure was confirmed. He needed another surgery or he wouldn't live another couple of months. At 8 months of age he went in for his second open heart surgery. This time his heart was reconstructed to work as though it had all the parts it needed. We were told that he would need another at about 3 years of age.
Time flew by and he stayed ahead of "normal" child development.
3 years old and he had his latest open heart surgery. He spent 3 weeks in the hospital. Again healing faster than what was expected. He flew back home from Edmonton with the drain tubes still poking out from under his rib cage. Two weeks later he had those removed also.
The doctors always told the family that he would never be able to be a physically active child. That he probably wouldn't even be able to participate in the simplest of gym classes in school.
At 4 years old he decided that he wanted to play soccer. . .
My sister signed him up and he joined his first team. He plays just as well as the other kids. He gives it everything he has and never complains. The coach will put him in goal when it's noticed that he is getting winded, but as soon as he can he is back on the field and giving it his all.
He now wants to try hockey and football. He will do it too. He doesnt' let his "disability" stand in his way.
What makes me the most proud is that he wants to join the RCMP when he grows up. Despite what the doctors said when he was born, I know he will do it. He has the courage to do things that everyone tells him he can't. He inspires me eveyday to live life to the fullest and never believe anyone when they say I can't do something.
He is 8 now. . .
He is the most courageous person I know.
Last Updated on Monday, 09 November 2009 23:50