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.
When Natalie was born, she arrived 5 weeks early, because her mom had developed pre-eclampsia. We’ve since learned from her transplant team that this was a blessing, as her gallbladder and ducts were still present, not fully functioning, but present. (Her disease is progressive - this means that it had not had time to progress since she was born early.)
On day 2 of her life she was sent to the NICU in Rockford for jaundice. She began her stay there under the UV lights, like any other jaundice case. Her team of doctors in Rockford performed a she had a HIDA scan, and then a cholangiogram. Results, though, were inconclusive. She presented like biliary atresia, but still she had a gallbladder.
We were referred to a wonderful team of doctors at Children's Memorial in Chicago, her doctors in Rockford had worked with this team and sang their praises. Natalie was tested for cystic fibrosis (via sweat tests and genetic studies) and those were inconclusive. We were stumped. He case did not present like a typical case of biliary atresia. During an exam with Dr. Whittington, Natalie happened to have a dirty diaper; the doctor took one look at it and affirmed that she had Biliary Atresia. From an excruciating 11 week waiting period; a diagnosis came from a dirty diaper in clinic!
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. And now, her portal vein is 100% blocked.
We calculated, somewhere along the way, that Natalie has spent over 300 days within the walls of Children’s Memorial Hospital in Lincoln Park. All the while, her team has been there with us, every step of the way. They are no longer just doctors and nurses – they are family. They know how to answer our questions before we even ask them.
Most importantly, they know Natalie. Not just patient number 927124 (it’s sad that I have spent so much time there that I learned this). No, this is Natalie to them. Sweet Natalie who took her first steps on the floors of 6 west. Natalie who drew a picture for Dr. Superina. The picture shows Natalie and her liver, with the good doctor’s arms wrapped around them both, keeping them both safe, in her words. He told us that he keeps this picture in his office.