Raiden's Fight With Biliary Atresia

My name is Tarah and I am asking for help for my son, Raiden, who has Biliary Atresia.

Biliary Atresia is a rare liver and bile duct disease that affects 10,000 to 15,000 babies.  The bile flow from the liver to the gallbladder is blocked causing the bile to be trapped in the liver.  The trapped bile causes damage and scarring of the liver cells (cirrhosis) and eventually cirrhosis.  Signs and Symptoms associated with this disease is jaundice (yellowing of the skin), itchiness, acolic stools (pale/white colored stools), dark urine, weight loss and irritability.

My son was 7 weeks old when I noticed that he was very yellow (jaundiced).  It was so noticeable that his eyes were turning yellow also.  I started to panic, he was beyond the age that would be considered physiological jaundice.  Then I noticed he had white colored stools (acolic stools) and I knew something was definitely wrong.  The day he turned 7 weeks we went to the pediatrican, they ran tests and his direct bilirubin was high (4.0).  We were referred to the gastroenterology and hepatology department in Benioff Children's Hospital that afternoon.  He was admitted that very night and we received the devastating news that our son might have Biliary Atresia.  2 days after admission he had surgery, a cholangiogram with a possible Kasai procedure if the cholangiogram showed that the bile duct was not patent.  The surgery was 3 hours long and when the surgeon met us in the waiting room, everyone was so happy because he said the bile duct was patent and he did not proceed with the Kasai.  We were elated but then came the scary question: If he doesn't have biliary atresia, then what does he really have?

After we left the hospital.  He was put on medication, ursodiol, aquadeks, liquid vitamin D and vitamin K.  He was also switched to a special formula for children who have malabsorption issues called Pregestamil.  We had weekly office visits to the outpatient clinic in Benioff for them to run laboratory tests to try to determine what was wrong with him and to check the progress of his liver.  It was painful for me to see my little baby boy being stuck with a needle every week and every time the tests came back they were all negative, yet my son's direct bilirubin levels were creeping up each week, his stomach was getting bigger because of the hepatomegaly and liver was feeling more and more firm.

By the time he was 3 months his direct bilirubin was at 8.4 and the doctors decided that he needed to be admitted again because with all the tests coming back negative, they determined through elimination that maybe my son really had biliary atresia.  My son was admitted December 22, 2016.  He had his surgery December 23, 2016, the day before Christmas eve.  He had a 7 hour long surgery (cholangiogram and Kasai procedure).  He is now recovering in NICU and spent his first Christmas, heavily sedated and on round the clock pain medications and antibiotics.  It pains us to see our first son going through so much.

We ask for financial help because we are a single income family.  My husband is the only one working because I have opted to stay home and take care of our son Raiden because of his health condition.  The medical bills are starting to pile up; as well as the cost of his medications and formula.  

Please help us, our son Raiden is such a vibrant and mellow little 3 month old.  It is so painful as a parent to see your child go through a serious illness and you cannot do anything about it but just support him.  There is no cure for biliary atresia, the Kasai procedure is just a technique to prolong the use of his natural liver before the inevitable which is liver failure.  

This fund will be used to pay for his medical bills, medication and also to save for a possible liver transplant in the future.  Please help our son, Raiden.  Even the smallest amount would be greatly appreciated.  Thank you so much!