Clara Duda's Helping Hands

Clara Duda is only 3 months old, but already is struggling with life. At 2 months of age Clara's jaundice became apparent as 'not normal' and took a turn for the worse. She was admitted into Winchester Hospital, then sent to Fairfax INOVA Children's Hospital, where some imaging was done and it was discovered Clara's bile doesn't leave her liver--and her bilirubin levels were high. 
From there she was moved to Children's National Hospital in Washington, DC. Clara endured more blood draws then I can remember, lots of imaging, 2 liver biopsies, and one surgery for Biliary Atresia that left her with no gallbladder and an 8 inch scar. We hoped that surgery would fix the problem, but we discovered that wasn't the issue. Normal Biliary Atresia is a blockage in the ducts going from the liver to the gut. . . no problems there. Instead, we found out it was the tiny ducts in her liver that are so swollen there is no room for the liver to expel the bile and bilirubin. Her issue is beyond rare, and more than one doctor has told me they have never heard of this before, and Clara's condition is very unique. Unfortunately, we found out the damage being done to her liver is bad, and she is bridging fibrosis. . . fibrosis is the final stages of the liver failing. It's been a month since then, but our sunny baby continues with weekly blood work and a few medications. We tried moving her to formula, but she would not. Finally, her weight gain was so bad she only gained 1 1/2 ounces in a week, and it should be about 7 oz per week. So we went back to the hospital in Fairfax this past week, and spent 4 days learning about the ng tube (it's a feeding tube inserted thru the nose into the stomach) and watching Clara's weight climb up. She went from 10.14 lbs to 11.9 lbs in just 4 feedings of Pregistimil formula. We learned Clara can't break down normal LCT fats, and she can only break down MCT fats. Sadly, breast milk and most formulas only have the LCT in them, Pregistimil is the only one with MCT. Clara gets fed 12 hours of Pregistimil every night, and can breast feed during the day for her comfort and immune system. 

For the time being, we are pursuing the possibility of a genetic disorder causing the liver issues, but this will be a long road. The next tests will take about 3 months to get approved by the insurance, collected and returned results. Clara has already done a cholestasis panel and several other genetic tests, with little results. Now we are having her daddy and I tested to see what we can find in relation to her.
We have had some very generous friends send us meals and grubhub at the hospital, and it has been so helpful. This fundraiser is to help us with the cost of Pregistimil that Clara needs, as well as any other supplements needed along the way. 
Thank you very much!
-Marigrace