Anthony B. - Quilt Finished in 2005
Born: September 13, 2000
Illness: Biliary Atresia
Anthony B.'s Story
written by mom
Anthony was born September 13th, 2000. He weighed 6 pounds 2 ounces and was 21 inches long. He seemed like a perfectly healthy little angel.
I was only 17 when I had Anthony, and although I noticed he was a little jaundiced looking, I couldn't seem to get the doctors to listen to me. He continued to get more and more yellow looking, even the whites of his eyes were yellow. Each time I would take him to see a doctor they would tell me that I was overreacting and treat me as the "dumb young mom". It was only when my mother, who lives in Arizona, and my grandmother urged me to take him to see another doctor that we found out the worst news ever.
We took Anthony to see a specialist in Indianapolis at Riley's Children's Hospital. They did several different tests and at first thought that he was born without a gallbladder and that this was causing his problems. It was not until they went to do another procedure that they finally realized it was Biliary Atresia.
Biliary Atresia is a chronic, progressive liver problem that becomes evident shortly after birth. Tubes inside and outside the liver, called bile ducts, normally allow a liquid produced by the liver called bile to drain into the intestines. Bile aids in the digestion of fat and carries waste products from the liver to the intestine for excretion. In Biliary Atresia, bile ducts that are located inside or outside the liver are damaged and blocked. When the bile is unable to leave the liver through the bile ducts, the bile accumulates, the liver becomes damaged and many vital body functions are affected.
Anthony was barely 2 months old when he had the Kasai procedure (surgery that creates drainage of bile from the liver when the ducts have become completely obstructed) and spent many weeks in and out of the hospital. We finally got to take him home on Christmas Eve, but with an apnea monitor hooked to him.
He had to have a central line put in January 2001, following his Kasai procedure because he was very sick with colitis. We then had a visiting nurse coming in to give him medicine and to teach me how to do it. He was on Vitamin A, E, and K as well as Prednisone, Zertac, Zantac, Ursodiol, Augmentin, & Ferasulfate.
He has had a central line once again in August of 2003 again for colitis. Each time he is in the hospital he is such a little trooper.
Other than his hard little distended tummy you would never know he was sick from looking at him. He is the sweetest loving little boy ever and I hate it that he has to go through so much pain.
Looking back on things now it angers me that the doctors simply disregarded my concerns because I was a teenage mother. I am lucky that my family urged me to seek a second opinion and I am blessed that I found Dr. Molleston and Dr. West at Riley's who have taken such good care of Anthony. At this point none of the doctors will even discuss the transplant and all I can do is pray that day never comes. No one wants to see their child go through this.
I am so thankful for sites like this that provide such support to families such as mine and the other children seen on here. Being a single mom I try to be strong and take all this on my own shoulders, but it's comforting to know that I am not alone and that there is hope!
Written by Anthony's mom in April 2005
