Analiese's Story

Analiese was born on November 25, 2002. We were told she was completely healthy. On her third day of life she became jaundiced. As usual we were told it was normal newborn jaundice.. As time went by she became more and more jaundiced. Our family practice doctor kept saying it was due the fact that I was breast feeding. After a lot blood draws and tests we were sent to St. Louis Children's hospital where expoloratory surgery was done and we had a final diagnosis. Analiese was now 7 weeks old. Analiese was born with Biliary Atresia (a liver disease where there are either no bile ducts coming from the liver or they are blocked, and bile cannot flow out of the liver, it eventually results in liver failure.) The surgeon did the kasai procedure (attached the small intestine to the liver) to try and promote bile flow. During the surgery it was also found that Analiese has polysplenia syndrome. Another very rare disease that affects approximately 1 in 250,000 people. Polysplenia syndrome is a vascular disease consisting of many anomolies. Analiese was born with malrotated intestines, her appendix was on the wrong side of the body, her heart is midline and rotated with a small hole in it, she has two small lungs instead of a normal 2 lobed, and 3 lobed lung, approximately 7 spleens, her liver was transverse with a preduodenal portal vein, an interrupted inferior vena cava, 2 superior vena cavas, and bronchial malacia.

Analiese was put on the transplant list at 4 months old. We are also told she would not live to see her first birthday without a liver transplant. On July 5, 2003 we received the call. Upon admission to the hospital one of the GI doctors told us that there were only a few surgeons in the United States that would be willing to perform a liver transplant on Analiese because of all of her anomolies. Analiese received her gift of life at 7 months old on July 6, 2003. One of the only reasons Analiese received her gift is because a family was willing to donate their 15 year old girls organs, and the liver was actually meant for an adult also awaiting a transplant. The adult was asked if she would be willing to share this liver with a pediatric patient. She said yes. So this one liver saved two lives.

During transplant the surgeons had to also take a vein from the donor to use in Analiese to replace her interrupted inferior vena cava. This vein was attached from her "new" liver directly to her heart, and it worked! Analiese suffered one setback from the transplant. Because of her unusual anatomy her phrenic nerve was severed, and the right side of her diaphragm was paralyzed. Which in turn caused her to have to have a tracheostomy and come home from the hospital on a ventilator. She had her trach removed on April 9th, 2004, and breathes totally on her own. Without the generosity of a family willing to donate and an adult willing to share, my daughter wouldn't be here today. She is a normal 20 month old toddler, and by looking at her you would never know that anything was ever wrong with her. Organ donation works, give the gift of life.