Ormond Beach baby’s life saved through partnership between pediatrician, Nemours and Wolfson Children’s
7-Month-Old Jackson Tews born with rare liver disease
February 1, 2013 | Ormond Beach, FL
Born in Daytona this past June, Jackson Tews was a seemingly healthy baby except for having jaundice, a common condition in newborns.
However, when the jaundice didn’t resolve by two months of age, Jackson’s pediatrician Jean-Claude Jeanty, MD, in Ormond Beach ordered labwork and found that Jackson’s bilirubin levels were elevated. Suspecting possible liver disease, Dr. Jeanty immediately referred the baby to Nemours Children’s Clinic, Jacksonville, to pediatric gastroenterologist and hepatologist (liver specialist) Katherine McGoogan, MD.
“I ordered the typical workup for a baby who has jaundice and whom we suspect may have liver disease,” says Dr. McGoogan. “Blood tests, an abdominal X-ray, a HIDA scan and ultrasound led to a diagnosis of biliary atresia.” Biliary atresia is a rare liver disease in which there is a blockage in the tubes (ducts) that carry bile from the liver to the gallbladder and small intestine. In essence, Jackson’s body was poisoning itself, a potentially fatal condition.
On August 22, 2012, Nemours pediatric surgeon Daniel Robie, MD, performed an intraoperative cholangiogram to confirm the diagnosis and then, while Jackson was under anesthesia, performed a liver biopsy and a four-hour Kasai surgical procedure at Wolfson Children’s Hospital to connect the liver to the small intestine, going around the abnormal ducts. “The hope is that the bile coming out of the liver will be able to drain into the small intestine,” says Dr. Robie. “The surgery was successful and within a week, Jackson’s bilirubin levels were back to normal.”
During surgery, Dr. Robiefound that Jackson had already developed irreversible cirrhosis (scarring of the liver), common in cases of biliary atresia, which may lead to a liver transplant in the future.
Jackson has been admitted toWolfson Children’s four times since surgery for a common infection called cholangitis that can result from the procedure. Now free from infection, Jackson is home recovering and spending time with his parents, his older brother and sister.
“Jackson is not out of the woods because he still has a form of chronic liver disease, so we follow him closely at Nemours on a regular basis,” says Dr. McGoogan. “He may need a liver transplant at some point in his life, but it may not be for years to come and the best-case scenario is that he won’t ever need one.”
Traveling back and forth from Ormond Beach to Jacksonville while Jackson was in the hospital was difficult for Mom Tyler and Dad Carl, but thanks to the nearby Ronald McDonald House, they were able to rest and be close to their son. “By acting so quickly, Dr.Jeanty and the physicians at Wolfson Children’s Hospital and Nemours saved my child’s life,” says Mrs. Tews.