Stories of Lost Children
Our Superman, Nicholas
by Karen H., Derry, NH, U.S.A.
We lost our precious Nicholas when he was only 5 1/2 months old to Biliary Atresia. When he was born, he developed Jaundice, they schedule tests for him, and was told he may have biliary atresia, which means that he would need a liver. They told us he needed surgery to check if his bile ducts were closed, this would indicate if he had biliary atresia. Biliary Atresia is not hereditry and there is no reason why it occurs in babies. It was nothing I caused, and there is no known cause. At 4 weeks of age he underwent a surgery called the Kasai procedure. It was on September 11th, 2001 he had the surgery and we were told he did indeed have biliary atresia, they would need to attach a piece of his intestine to his liver so the bile would flow. The hope was that he would grow bigger before he would need a liver. His operation went great. He was in the hospital for 2 weeks. When he was around 4 months old he seemed to lose his appetite. I brought him to the doctor numerous times and was told he had a cold. I knew he did not, and they kept telling me the same thing. It was not until he started to cry a lot before they sent him to Boston. He was in the hospital for 50 days waiting for a liver. I got testing to see if I could give him a piece of mine, but I was not a match. He spent his first and last Christmas and New Years in Boston Children's Hospital waiting for a liver that never came. He went through so much, more than 15 blood transfusions, big belly filled with liquid, he had a drain in his belly to drain the fluid out, he was on heavy drugs, had bleeding episodes in which he would vomit blood, or have nosebleeds. It was torture to watch my precious baby boy go through this. He got an infection, and his pulse started to go down, he died in my arms on January 16, 2002 at the age of 5 1/2 months old. He never even got to play with his Christmas toys. It has been a month, and I am in so much pain, I can hardly go to the grocery store without crying, his daddy called him Superman, he was so right. He was such a good boy, always smiling at everyone, even if they were not talking to him or looking at him. He had beautiful blue eyes and was so cute. He only cried if he was hungry or tired, and just loved to read books with me and would touch all the pages. I am so hurt and devastated and we miss him so much. I hope people will consider giving up their organs after death as there are so many babies, children and adults who need them. If my baby had gotten a liver, he would still be here. It hurts. As the saying goes, 'Don't take your organs to heaven, heaven knows we need them down here.'
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