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Welcome to my web page. My mommy made this web page for me, to tell my story and to keep our family and friends updated on how I am doing.

Analiese Ava

Born: November 25th, 2002

Weight: 6lbs. 14oz. Length: 19 inches

Analiese's banner made with love by The Heroes Banner Site

My mommy, daddy, and my big sister Chelsey are so excited that I am here.
I was born with a rare liver disease, Embryonic Biliary Atresia (An obstruction of the bile ducts caused by their failure to develop normally before birth.)Biliary Atresia affects 1 in 15,000 babies per year in the united states. I also have Polysplenia syndrome [I have multiple spleens (7), my heart is mid-line and rotated, 2 bi-lobed lungs, 2 superior vena cavas, an interupted inferior vena, a pre-duodenal portal vein, appendix found on wrong side of the body, liver lies transverse, malrotated intestines.]Polysplenia affects 1 in 250,000 babies.
I had my first surgery at 7 weeks old, the kasai procedure (hooked my small intestine to my liver to try and promote bile flow.)It was unsuccessful. I also had an appendectomy, and the Ladds procedure to fix my intestines.
I was placed on the transplant list when I was 4 months old. On July 6, 2003, I received the gift of life, a liver transplant. I had a complication from my transplant. My phrenic nerve was severed which caused my diaphragm to be paralyzed. I had to have a tracheostomy done and I came home from the hospital 2 months later on a ventilator.

My mommy says that I am a true Miracle. I continue to amaze everyone at how well I have bounced back.

Journal

Monday, July 5, 2010 10:48 PM CDT

7 years ago tonight, a family had to make a choice, that choice saved Analiese's life. We got "the call" at 5:00 p.m. on Saturday, July 5, 2003. I remember it as if it were yesterday. Gino answered, and Lynn (transplant coordinator) said "Are you staying cool?" (It was really hot that day.) Gino said "we're trying too" then he said "what".. And handed me the phone, and told me they may have a liver for Analiese. I remember being in disbelief. We had one hour to find someone to take care of Chelsey, and to get our bags packed, because I never did it. I still had a little hope that Analiese's liver might regenerate. I was still in a little bit of denial apparently.
I remember the drive, it was long, and Analiese cried and cried. She was so uncomfortable in her carseat with that big belly. I even took her out of it as we drove into St. Louis. I remember holding her so tight, and trying to show her the fireworks that were going off over the highway. I was so afraid it was going to be one of the last times I would ever hold her again.
We finally made it to the hospital; and it took practically all night for her to be prepped for surgery. I remember when they took her from my arms that Sunday (July 6) morning. I remember Dr. Lowell telling us to expect the surgery to take longer than the average liver transplant. We went to the waiting area, and it was so empty we were the only ones there... After 7 hours, Dr. Lowell came out, and said everything went well. But expect her to have to go back into surgery because 70f the time they have to go back in.. And with Analiese's anatomy he was pretty certain they would have to go back in. But they did NOT...
Although Analiese did have a complication (paralyzed diaphragm) which caused her to have to have the trach, and ventilator. She did awesome, and here we are 7 years later with a beautiful, funny, and very entertaining girl, who is now a level 4 gymnast and will be competing this year.
I also can't help but to think of the family that lost their daughter 7 years ago today... I can't even imagine their pain. Rest in Peace Danielle; I am forever grateful.

Read Journal History

Hospital Information:

St. Louis Childrens Hospital
One Children's Place
St. Louis, Missouri

Links:

E-mail Author: stephanie1228@yahoo.com

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