There is a story that I’d like to share with you, a story I’ve been thinking about writing for over 3 years now. It’s not a story about anything food related, it is merely a story about a child who overcame the greatest odds and survived.
This child I’m speaking of is my little nephew, Nicholas. Nicholas was born Aug 31, 2010. He was 2 1/2 months premature and weighed just a little over 3 lbs when he was born. I’m not sure if you’ve ever seen a baby that small but when I first saw him I burst into tears. Nicholas could fit in the palm of my hand. As amazing as this is in itself, this is not Nicholas’s story.
Nicholas’s story is far greater than that. Nicholas was born with a condition called Esophageal Atresia, which causes the esophagus to end in a blind-ended pouch rather than connecting normally to the stomach. If when you first read this you cannot understand it’s meaning, just think for a moment. Nicholas could not eat because his esophagus was not connected to his stomach. The statistics I’ve heard of this seem to vary, but the last I read about it, is that this seems to happen once in every 2500 births.
When the doctors discovered this they wanted to do an emergency surgery to sew the esophagus to the stomach. However, Nicholas was far too small for surgery. At 3 lbs in weight, no doctor would want to operate on him. The doctors suggested that he needed to gain some weight before they could safely operate. This in itself was not an easy task considering he couldn’t be breast fed. The only way he could be fed was through a gastrostomy tube (G tube) that is inserted into the stomach, Needless to say it was not an easy task to easily make him gain some weight.
But Nicholas had the will to live and after a couple weeks he was at 5 lbs and the doctors felt they could operate on him. The surgery was successful but Nicholas’s battle for life is just beginning.
Nicholas contracted 3 viruses in the hospital after the surgery, one of which was meningitis. At this point the doctors were not sure he was going to survive. This was devastating for my sister and the family. I remember being in the hospital, half a dozen doctors gathered around his incubator trying to figure out how this might have happened. I felt like I was in an episode of House. These were a very hard few days we all went through, especially for my sister and brother in law.
But as I said before Nicholas had the will to live and he wouldn’t let a mere virus get to him. Day after day he got a little bit better and eventually he was strong enough to come home right before Christmas. He was the best Christmas gift anyone could get.
However, he was not ready to eat through his mouth, as much as everyone tried, he’d throw up everything that he’d eat. So my sister and brother in law continued to feed him through his G tube. Unfortunately it has now been more than 3 years and Nicholas is still fed through a G tube. His esophagus was successfully connected to his stomach, everything is working as expected, but for him it’s turned into a psychological issue now and the doctors are suggesting that when he’s ready he will eat. He also won’t talk, pretty much anything that involves his mouth he will avoid. He is a normal boy, in every sense of the word, he walks, he runs, he giggles, he has fun, he is a loving boy, but he won’t eat or talk.
We’re all anxious for the day when he’ll wake up and say something, and wouldn’t it be great if the first words that came out of his mouth were “I’m hungry!”.
Nicholas is a survivor. I have no doubt in my mind that he’ll grow up to be a normal chatty boy. Everyone is very grateful to all the doctors who have worked with Nicholas and continue to work with him, to make sure he overcomes everything he’s going through. Nicholas continues to go to doctors regularly and do all kinds of therapy.
Nicholas is a miracle child. He has been through so much in his short little life, more than most of us go through in a lifetime. It’s taken me over 3 years to get the courage to write about this as I knew it would be difficult to do without shedding a few tears. I am glad I did though. I feel that the least I could do is raise awareness of this condition that not many people know about. The doctors at the Children’s Hospital in Calgary have been absolutely amazing and have done everything humanly possible to make Nicholas better. We would like to thank the Children’s Hospital from the bottom of our hearts and would like to help them in return. If you would like to donate to the Children’s Hospital please make your donation by following this link or click on the button below.