Faye's journey through Biliary Atresia: Concerns arise

Saturday, August 11, 2012

Concerns arise

May 28, 2012 my sweet baby, Faye Seraphina was born. A few hours after her birth, the nurse informed us that she would have to be put under the bili lights because her bilirubin levels were high. After 24 hours of phototherapy, they discharged us, though her levels stayed the same, because she was now 2 days old, she was now at a lower intermediate level.

I had taken her to her first well baby visit at 5 days but all the doctor said was to continue formula feeding and putting her in sunlight. 3 weeks later, when she turned 4 weeks, I was still concerned because her eyes were still very yellow.But then I took her in when she was a month because her eyes were still yellow. The doctor examined her and said that the eyes were the last place for the yellow to leave, which could take up to 6 weeks.

And of course, I believed the doctor and gave it 6 weeks. We went to her 2 month check up when she was 10 weeks, to a new doctor.

August 10, 2012 at 2:30pm we arrived at the doctors office. We waited in the room and right when he walked in, he was very concerned. He put in orders to do blood tests and told us he would inform us right away with the results.

7:00 pm that night, Dr. Wu called me very concerned and told me to go to the Emergency Room right away. All I can remember is him telling me that her direct bilirubin levels were very high, liver enzymes were high and to tell them something about Biliary Atresia. I didn't know what that all meant but my life would never be the same after.

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What is Biliary Atresia?

Biliary Atresia is a rare liver disease that only affects infants. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats.
In biliary atresia, the bile ducts become inflamed and blocked soon after birth. This causes bile to remain in the liver, where it starts to destroy liver cells rapidly and cause cirrhosis, or scarring of the liver.

What causes BA:
The cause of this disease is not known. In some infants, the condition is most likely congenital, meaning present from birth. About one in 10 babies with biliary atresia have other congenital defects. Some research indicates that an early viral infection may be linked to biliary atresia.
Scientists do know that biliary atresia is not hereditary; parents do not pass it on to their child. It is also not contagious, and it is not preventable. It is also not caused by anything an expectant mother did or did not do.

How is BA diagnosed:
Since other conditions lead to symptoms similar to those of biliary atresia, doctors must perform many tests before a conclusive diagnosis can be made. These tests may include blood and liver tests, an ultrasound examination, X-rays and a liver biopsy, in which a small amount of liver tissue is removed with a needle for examination in a laboratory.

How is BA treated:
Unfortunately, there is no cure for biliary atresia. The only treatment is a surgical procedure in which the blocked bile ducts outside the liver are replaced with a length of the baby’s own intestine, which acts as a new duct. This surgery is called the Kasai procedure after Dr. Morio Kasai, the Japanese surgeon who developed it.
The aim of the Kasai procedure is to allow drainage of bile from the liver into the intestine through the new duct. The operation is completely or partially successful about 80 percent of the time if performed early (before 3 months of age). In babies who respond well, jaundice and other symptoms usually disappear after several weeks.
In cases where the Kasai procedure does not work, the problem often lies in the fact that blocked bile ducts are “intrahepatic,” or inside the liver, as well as extrahepatic, or outside the liver. No procedure, except for liver transplant, has been developed to replace blocked intrahepatic ducts.
The Kasai procedure is most successful in babies younger than 3-months-old, so early diagnosis is important.
If the Kasai procedure is not successful, the only other option is a liver transplant. However, a suitable donor organ must be found quickly, before damage to the liver from the backed-up bile becomes deadly.

Babies with BA:
Without successful treatment, few children with biliary atresia live beyond age two. In some cases, where the Kasai procedure is completely successful, the child may recover and live a normal life. However, in most cases, even when surgery is successful, patients will suffer gradual damage to the liver. These children will need specialized medical care throughout their lives, and many will ultimately need a liver transplant.

Transplant:
In children with biliary atresia, a liver transplant is generally not attempted unless the Kasai procedure has been tried. In cases where that operation is unsuccessful, the child may become a candidate for a liver transplant. Success depends on the timely availability of a matching donor liver. Fortunately, survival rates for liver transplant recipients have increased dramatically with improved surgical techniques and the development of drugs that help overcome the problem of organ rejection.