The story of Natalia
I am Natalia Rose. I am 5 months old.
I wa born pretty jaundice. However my first pediatrician said it was newborn jaundice and that it would go away. After two months of being jaundice my parents took me to a new pediatrician to get a second opinion.
The new pediatrician was concerned and had me go see a gastroenterologist. The gastro doctor ran multiple tests. He suspected that I may have Biliary Artresia (a rare liver disease that affects the bile ducts and causes the liver to not process out bile. I had a HIDA scan and a liver biopsy done at 2.5 months of age, both tests showed no damage to my bile ducts and showed normal bile flow, so Biliary Artresia was ruled out. All of my other tests came back negative as well. My gastro was stumped.
Around 3.5 months of age I began to have pale white stools. My gastro ordered bloodwork and based off of the results I was hospitalized for liver failure.
The gastro thought it would be best if I was transferred to a liver transplant center to be evaluated for a transplant. I was life flighted to a center in Utah.
My team there believed I had Biliary Artresia. So they decided to do a cholangiogram, a small procedure where they inject dye into the liver to see if it processes it out.
On 12/28/17 I had my cholangiogram where the surgeons determined that I did in fact have Biliary Artresia and my liver had so much damage that it was failing me. The team opted to perform the Kasai procedure. They removed my damaged ducts and gall bladder and attached a piece of my intestine to my liver to act as a drainage tube.
I am 6 weeks post Kasai. I have had multiple complications since and am currently hospitalized waiting for my gift to have a second chance at life.