Carter B.

Catherine and Josh Bertrand welcomed their baby boy, Carter Owen, into the world on April 16, 2011. The couple was overjoyed with the arrival of their first-born child and everything was falling into place as the Bertrand’s began their beautiful journey as a party of three.

A Blessing in Disguise

Like many newborns, Carter was born slightly jaundice. Catherine said, “His pediatrician said he was okay so we thought he was too.” A few weeks after leaving the hospital, Carter began to develop bilateral inguinal hernias – something that would soon be a blessing in disguise. Due to the yellowing of his skin, Carter’ssurgeon expressed concerns about his liver. Catherine said, “At just nine-weeks old, Carter underwent hernia surgery and our first attempt to cure his liver disease but unfortunately, when the surgeon injected a tracer fluid through the ducts of Carter’s liver, they did not flow properly.”

At the time, pediatricians thought Carter may have biliary atresia, a rare disease causing the liver’s bile ducts to become inflamed and trap bile in the liver causing cirrhosis, or scarring of the liver. He underwent the Kasai procedure in an attempt to fix his liver but when he did not improve – at just four-months-old – pediatricians sent him to see a liver transplant specialist and by seven months old, Carter was placed on the liver transplant waitlist. Catherine said, “Is this really happening? We were distraught.” Carter did well for a while but in the fall of 2012, several labs and scans led to the discovery of a nodule on his liver. The mass created brand newproblems for Carter including severe itching caused by the toxins trapped in his liver and the addition of a feeding tube due to his loss of appetite. Six months later, another nodule was found on Carter’s liver and it was then clear to physicians that he had hepatocellular carcinoma or liver cancer and his MELD score was increased on the transplant waitlist.

At the time, pediatricians thought Carter may have biliary atresia, a disease causing the liver’s bile ducts to become inflamed and trap bile in the liver causing cirrhosis, or scarring of the liver. He underwent the Kasai procedure in an attempt to fix his liver but when he did not improve – at just four-months-old – pediatricians sent him to see a liver transplant specialist and by seven months old, Carter was placed on the liver transplant waitlist. Catherine said, “Is this really happening? We were distraught.” Carter did well for a while but in the fall of 2012, several labs and scans led to the discovery of a nodule on his liver. The mass created brand new problems for Carter including severe itching caused by the toxins trapped in his liver and the addition of a feeding tube due to his loss of appetite. Six months later, another nodule was found on Carter’s liver and it was then clear to physicians that he had hepatocellular carcinoma or liver cancer and his MELD score was increased on the transplant waitlist.

Carter Gets a Liver

After thirty-two days in the hospital, eighteen more days of testing and just six days critical days on the transplant waitlist, Carter received his new liver. Catherine said, “So many mixed emotions were felt. One of them was the realization that another family was losing their child as we regained ours. What a sacrifice – they allowed Carter to live by giving us a part of their child.”

A month post-transplant, shortly after his second birthday, Carter began to walk. Catherine said, “And after twenty-two months of having a feeding tube and just four months post-transplant, Carter was eating on his own! The disease that caused Carter’s liver cancer, hypercholanemia, is a rare genetic disorder that causes liver cells to leak, trapping bile in places where it doesn’t belong. “If you didn’t know he had a liver transplant, you wouldn’t be able to tell. We are still working through a few developmental delays but our family is truly blessed to still have him. We are all so much more appreciative of the little things in life like, being able to walk, talk and eat by mouth. It brings tears of joy to our eyes to see him play like a ‘normal’ child,” she added.

February is rare disease month. By making a tax-deductible gift to ALF, you support children and families like Carter’s when they need it most. To learn more, visit our website.