Biliary Atresia Facts:

  • affects one in every 10,000-20,000 infants born in the US
  • is a life-threatening liver disease that causes a total obliteration of the bile ducts
  • is the most common reason for liver transplantation in children
  • leads to cirrhosis of the liver and ultimately liver failure
  • is not preventable and the cause is unknown
  • has no cure

Organ Donation Facts:

  • there are currently over 100,000 people waiting for an organ donation
  • the largest group waiting is from 18-49 years of age
  • last year more than 8,000 people died due to the lack of organs
  • an average of 18 people die each day while on the waiting list for an organ donation
  • last year, more than 23,000 patients began new lives thanks to an organ transplant
  • organs and tissues from a single non-living donor can be used to benefit more than 50 people
  • living donors can donate a kidney and parts of their liver, lung, pancreas, or intestine
  • living donors can be evaluated to help a friend, family member or
    even donate anonymously to patients on the wait list

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Biliary Atresia is an inflammation and blockage of the tiny tubes (bile ducts) that drain bile from inside the liver to the gall bladder and on to the small intestine. As a result of the blockage, bile becomes trapped in the liver causing scarring and eventually cirrhosis. This disease begins very soon after birth and affects 1 in approximately 15,000 infants.

Although the cause of Biliary Atresia is unknown, the disease is not hereditary and is not contagious. (Download a full study on Biliary Atresia here)

There is a specific surgical treatment known as the Kasai procedure which has proven to be most successful if performed before two months of age, making early detection critical. Infants with Biliary Atresia generally appear normal at birth but develop jaundice at 2 to 3 weeks. Stools are pale in color and urine is dark. Sometimes, a swollen and firm abdomen may be present due to an enlarged liver. It is recommended that infants with jaundice beyond four weeks be tested for Biliary Atresia.

Treatment of Biliary Atresia usually begins with the Kasai procedure. A successful kasai will allow at least some bile to be secreted from the liver, slowing the scarring process. If performed early enough, approximately 80% of infants who are operated on have bile-flow restored. 50% of these will have partial bile drainage and as many as 30% will have complete bile drainage.

Even though bile flow may be restored or partially restored, many patients’ livers will continue to scar. Eventually, a liver transplant may become necessary. The majority of patients require a liver transplant before 15 years of age. Liver transplantation in children has a very high success rate and brings great hope for Biliary Atresia patients.

It is our mission to help find a cause and a cure for this disease. We promote Biliary Atresia awareness and the importance of organ donation. We support those battling Biliary Atresia. We raise funds which go directly to the research of Biliary Atresia at St. Louis Children’s Hospital and to needy families who are affected by this disease.

How can you help? If you have Biliary Atresia, or if you have a child diagnosed with Biliary Atresia, please take some time to complete our survey. Although this is not an official medical study, we hope to gather data that may connect some dots and help in the quest to find a cause. Donate! Every dollar helps, but donating your liver could save lives!

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