Natalie K. - Quilt Finished in 2006
Born: September 30, 2003
Illness: Biliary Atresia
A Thank you from Natalie's Family!
Written May 26, 2006
Oh, how simply wonderful.
And the timing couldn’t have been better. Natalie was having an icky day and fell in love with it. It’s on her bed right now!!!
Becca and Natalie
Natalie's Story
written by mom Becca
Natalie was born with Biliary Atresia. It is a progressive disease that over time damaged her liver - it is a pediatric liver disease with no known cause or cure.
She was born 5 weeks early due to mom developing pre-eclampsia. On day 2 of her life she was sent to the NICU for jaundice. She began her stay there under the UV lights, like any other jaundice case. After a few days, they did a full blood work-up. Her GGT level was around 1700 (normal is 5 - 55), letting the doctors know that something else was wrong. After 3 inconclusive ultrasounds, she had a HIDA scan, and then a cholangiogram (a radiographic image of the bile ducts) and biopsy on October 13th, 2003.
We were referred to a wonderful team of doctors at Children's Memorial in Chicago. At first we were told it might be Cystic Fibrosis. So genetic tests were sent away, and those took 6 weeks to get back. The results came back negative, so we went to Children's for a follow up. During the exam, Natalie happened to have a very pale dirty diaper, the doctor took one look at it and rediagnosed her with Biliary Atresia. She was admitted, and had another biopsy, it was again inconclusive. She then had a cholangiogram followed by a Kasai Operation on December 19th, 2003.
Over the next year, Natalie had many complications of end stage liver disease including: jaundice, portal vein hypertension, ascites (abnormal accumulation of serous fluid in the abdominal cavity), and she had reoccurring infections of Cholangitis in her liver. In November of 2004, Natalie was added to the national transplant waiting list, UNOS, but even with all her complications, her PELD score was low at 11. Her Godfather, Pat, was tested to be a donor, but it was found that the surgery would be too dangerous for both of them. So then mommy was tested and in February 2005, Natalie received the gift of life for a second time from her mommy!!!
Following her transplant she had her share of complications... 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.
Following this, Natalie had a few minor cases of rejection and some bile duct issues (caused by damage done to the liver when the hepatic artery clotted). She also developed Rotavirus while we were in the hospital.
Most recently Natalie developed PTLD (Post transplant B-cell lymphoproliferative disorder) and developed hemolytic anemia. PTLD is cancer in the lymph nodes, and so far Natalie has responded well to decreasing immune suppression and has not required chemo. Hemolytic anemia means that she was breaking down her body's store of hemoglobin. PTLD was suppressing her bone marrow, decreasing the body's production of hemoglobin and then her body was destroying the hemoglobin. This made frequent blood transfusions a must. Then miraculously, as quickly as this complication started, it stopped.
Over the last year, she has been in the hospital more than out. She is behind developmentally, but we're catching up! And she currently has a PTC tube in her tummy, going in through a bile duct to keep it clear from further blockages.
The road that we've traveled has been bumpy to say the least. But she is our little miracle!!!
Written by Natalie's mom Becca in November 2005
