Here is a brief synopsis of Natalie's Story:
On February 9, 2005 Natalie received a new (but slightly used) portion of her mommy's liver!!!
Natalie needed a new liver because she was born with biliary atresia . It is a progressive disease that over time damaged her liver - a pediatric liver disease with no known cause or cure.
As an infant, before her transplant, Natalie had many complications of end stage liver disease including: jaundice, portal vein hypertension, ascites, and she had reoccurring infections of Cholangitis. In November of 2004, Natalie was added to the national transplant waiting list. Even with all her complications, her PELD score was low at 11. Her Godfather, Pat Dempsey, was tested to be a donor, but it was found that the surgery would be too dangerous for both of them. So then her mommy was tested and in February of 2005 Natalie received the gift of life for a second time from her mommy!!!
Following her transplant she had every complication in the book. We think. We threw the book away!
- 2 days following the transplant, she developed a clot in her hepatic artery and was relisted for a new liver - Status 1. Status 1 is given to kids with a life expectancy of 7 days. However, when they went in to operate, they were surprised to find that they could fix the problem.
- Then a few days later she had a MASSIVE bleed. She was given 3 units of blood in an hour. A short while later her surgeon (Dr. Superina) met us in the waiting room. They could not figure out where the bleeding was coming from and as they tried to operate - the bleeding stopped.
- then she had issues of rejection, developed PTLD, and developed hemolitic anemia. PTLD is cancer in the lymph nodes; it is something that we will continue to monitor with CT scans.
- She also had reoccurring bile duct issues, which resulted in her having to have a PTC drain in place for almost 2 years and to be relisted. Her "tubey" has been out for a little over 2 years, almost as long as she had it in...we were enjoying a brief period of calm..
- And now, her portal vein is 100% blocked. She's still re-listed for a new transplant, but inactive on the list at this time.
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