This is Raquel Amari Allen. She was born on September 5, 2008 and diagnosed with Biliary Atresia at three months of age. 

It all began with a Saturday morning visit to the doctor's office because of blood in her stool. We suspected the blood was from her being constipated. The nurse practitioner was instantly concerned about Raquel's coloring. She called the doctor and sent us to the local hospital for some blood tests.

When we got to the emergency room, a number of blood tests were ordered and the results came back abnormal, specifically the bilirubin (Billy Reuben) levels (this is what causes jaundice in newborns). Since the local hospital did not have a liver specialist on hand we were referred to Comer Children's Hospital at the nearby University of Chicago. Within a few hours, the suspected constipation became a serious liver problem.

The first two days at Comer were filled with numerous doctors, residents and lots and lots  of questions. After many tests she was diagnosed with Biliary Atresia.

Biliary atresia is a chronic, progressive liver problem that occurs once in every 15,000 births. Tubes inside and outside the liver, called bile ducts, normally allow a liquid produced by the liver called bile to drain into the intestines. With biliary atresia these ducts are blocked and damaged. The bile is unable to leave the liver and instead backs up inside of the liver. The damage caused by the blockage is irreversible and cirrhosis occurs. There is no cure for Biliary Atresia, but there are two treatments. The first is a Kasai procedure and the second is liver transplant.  On December 9, 2008 Raquel had her Kasai procedure.

The Kasai procedure connects the bile drainage from the liver directly to the intestinal tract. It is most successful when done before an infant is 6 weeks old, before irreversible biliary cirrhosis (liver damage) sets in. Raquel was 13 weeks old. The Kasai procedure is helpful because it can allow a child to grow and remain in fairly good health for several years. Eventually, cholestasis (backup of bile in the liver) will occur, causing liver damage. Up to 66 percent of children who undergo the Kasai portoenterostomy will eventually need to have a liver transplant.

 Raquel recovered quickly from her surgery without any complications and   was a real trooper throughout her stay. She was discharged nine days later.

In the five months after her operation Raquel did well and was able to gain some weight and showed no severe symptoms of her disease. She grew much slower than a baby without this health problem and her liver was enlarged as was her spleen. In May, her doctor told us that Raquel would be listed for a new liver. The prediction was that she would need a new liver within 6 months to a year. This meant that her liver would begin to fail within that time. We knew this was likely in her future but had hoped it would be sometime after her first birthday. We were told about the living donor option. If we were able to find a blood type match, we would not have to wait for Raquel to get sick to get a liver for her.

In June, our unexpected donor stepped forward. Not a family friend, not a sibling or relative at all, but a co-worker!  

Raquel's transplant was scheduled for August 25, 2009. Two weeks before her transplant she started to show some signs of the direction her liver was headed. Raquel had her liver transplant as scheduled. The doctors have said it could not have gone smoother.

There are currently more than 100,000 people waiting for organs in the United States. If our donor had not come forward Raquel would still be one of those waiting. We have been very blessed to have Raquel's donor because surely without her Raquel would have gotten much sicker and suffered more while waiting. We encourage everyone to make the decision to become organ donors and to REGISTER that decision at donatelife.net. Raquel and her donor have recovered and are doing very well.