Biliary Atresia

Gavin Sprague was jaundiced at birth. Not an entirely uncommon occurrence in newborns, so his pediatrician sent him home after the normal two days in the hospital with out serious concerns. At his one month check up in early November, Gavin had only gained one pound and was still jaundiced. His pediatrician suggested that his parents, Bethany and Andre, add a little formula to his breastfeeding schedule to kick-start his liver. By his 2 month check-up, Gavin had only gained 1 more pound and was and was becoming even more jaundiced than he was before. Again the pediatrician said to “give Gavin more formula and the jaundice will go away.” Bethany started searching the internet for articles on breastfeeding, weight gain, jaundice—anything that could help Gavin. She called a lactation consultant and spoke to a nurse on a medical hotline… she couldn’t find any concrete explanations.

As fall turned to winter, Gavin became thinner and more jaundiced. Bethany and Andre tried everything to help Gavin reach a healthy weight. Nothing was working. They were convinced that something was truly wrong with Gavin’s health. They returned to the doctor and demanded that Gavin be tested. His pediatrician was reluctant, but agreed to run the tests. He commented that if Gavin had liver issues, his symptoms would have included white stools. Bethany and Andre felt the ground give way: Gavin’s stools had been white! They thought it was a consequence of switching him from breast milk to formula. No one had mentioned this key symptom before. They waited anxiously for Gavin’s test results to provide some kind of answer. Within a few days, his blood test confirmed that Gavin had a problem with his liver. Frightened and uncertain, Bethany and Andre clung to any comfort they could find. The doctor had sent Gavin home with them. Surely that meant that Gavin’s liver problem was not catastrophic…

An hour after they returned home from the doctor’s office, they received a phone call telling them to bring Gavin to the hospital immediately. A specialist had seen his test results and Gavin’s life was in danger.

The initial tests led doctors to believe that Gavin had Biliary Atresia—a liver disease in which parts of the bile ducts are missing. Usually doctors diagnose it at 8 weeks, or even earlier. Since his first pediatrician recognized his symptoms so late, Gavin had to undergo numerous tests in the hospital. After four days, none of them were conclusive.

Biliary Atresia success rates drop to 1% at 12 weeks…which is exactly how old Gavin was now. There was no more time to wait for more test results. They operated immediately to see the real state of Gavin’s liver and found that it was fully intact. This ruled out Biliary Atresia. A liver biopsy was necessary for conclusive answers.

A few weeks later the biopsy results came back. Gavin’s diagnosis was Alpha-1 Antitrypsin Deficiency, a genetic condition that can affect the liver in babies, or the lungs in adults. “We had never even heard of it before!” says Bethany. “It’s so strange that you can go your whole life not even knowing about certain conditions, until it smacks you in the face because one of your loved ones is diagnosed with it. And then this whole world is opened up to you, and you realize there are hundreds, thousands of people suffering…and nobody evens knows about it. That’s just not right!”

Bethany and Andre soon learned that Gavin’s story was not an uncommon one in the world of liver disease. Many other families have children who were misdiagnosed and whose symptoms were ignored. These children also had to undergo emergency hospital stays, surgeries and seemingly endless tests. Many doctors just aren’t educated about liver disease and therefore don’t read the warning signs correctly or in a timely way. There are many conditions that cause liver disease in children and many of them are fatal unless they are caught early.

For over 32 years, the American Liver Foundation has been working to raise awareness about liver disease—its causes, symptoms, treatments, and ways to prevent it. We are the number one non-governmental funder of research on liver disease and future cures. From the thousands of youth who participate in our Love Your Liver education program to more than one hundred thousand people each year who rely on us to provide vital information and resources in their struggle against liver disease, ALF is committed to educating the general public, liver disease patients, healthcare and social service professionals, policymakers and anyone impacted by liver disease. We are currently developing special professional education programs that address the need for greater awareness of liver disease and its symptoms among general and family medical practitioners.

Awareness saves lives and our work requires your support. Please donate today and help prevent another family from experiencing a story like Gavin’s. Your gift makes a difference.

Last updated on July 11th, 2022 at 04:11 pm

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