HOUSTON (KTRK) -- Cade looks like your typical healthy 13-year-old, but wouldn't be here today if he didn't receive an organ transplant at the age of one. He was born with a deadly liver disease which affects 1 in 10,000 births in the US.
Dr. Benjamin Shneider is the Chief of Gastroenterology, Hepatology and Nutrition at TX Children's Hospital. He said, "Biliary Atresia is a disease when the tubes that normally let the bile, the yellow material that liver makes, those tubes are damaged."
That could lead to scarring and cirrhosis of the liver, "and the need for liver transplant," according to Dr. Shneider.
But if caught early on, Biliary Atresia can be treated with the Kasai procedure, a surgery that bypasses the damaged ducts. Preliminary data suggests infants who undergo the procedure before 30 days of life may have a better outcome and less chance of needing a liver transplant.
Unfortunately, not many are conducting the tests right now.
"Screening for Biliary Atresia in the United States does not exist on a formalized basis."
Which is why researchers at Texas Children's are pushing for universal newborn screening. When Cade was diagnosed, it wasn't until a few months after birth. He did receive the Kasai procedure, but unfortunately the disease had advanced, and he was put on a transplant list.
Cade's mother Jennifer told Eyewitness News, "We were in a support group and we literally watched children die waiting for a transplant. So the fear was very, very real."
Cade eventually received his needed liver. Around the same time, his parents founded the Cade R. Alpard Foundation for Pediatric Liver Disease. Since then, they have raised approximately $400,000 for research. But there's still a lot of work to be done.
"We hope to find cures for Biliary Atresia, other than transplant," Jennifer said.
For now, the goal is pushing for earlier screenings which could prevent the need for transplant in many patients.
Texas Children's Hospital pushes for earlier liver disease screenings