When Cooper was 2 weeks old, he began showing signs of jaundice, a common condition in which a newborn's skin appears yellow due to increased levels of bilirubin in their blood. Typically, the condition improves as the baby's liver begins functioning as it should. However, when Cooper's symptoms persisted at his 2-month check-up, his pediatrician suggested they check his blood levels to determine the cause.
"Cooper's pediatrician called us before New Year's Eve weekend to tell us that his results came back abnormal," says Cooper's mom, Alyssa. "By the next morning, she had connected us with Dr. Barth, and we brought Cooper to Children's Health℠ for his first visit."
Bradley Barth, M.D., a pediatric gastroenterologist at Children's Health and Professor at UT Southwestern, was concerned Cooper had biliary atresia. Biliary atresia occurs when an infant's bile ducts are blocked or don't function normally, causing bile to back up in the liver. The condition can be life-threatening if not treated early, making it extremely important to test any babies who show signs, such as prolonged jaundice.
On Jan. 2, Cooper underwent a surgery known as the Kasai procedure to remove the blocked bile ducts and reinstitute communication of the biliary system to his intestine to enable the bile to drain from his liver.
As he recovered in the NICU, Cooper and his family were introduced to Amal Aqul, M.D., a pediatric gastroenterologist and liver specialist at Children's Health and Assistant Professor at UT Southwestern. Drs. Barth and Aqul closely monitored Cooper as he recovered from surgery to determine whether his liver was functioning properly. Though Cooper's liver markers remained high and he still showed signs of jaundice, he was strong enough to go home after two weeks.
Cooper grows stronger
Over the next few months, Cooper returned to the Gastroenterology clinic for weekly visits with Dr. Aqul, and although he was slowly gaining weight, she remained concerned that his levels had not returned to normal. But neither Dr. Aqul nor Cooper's family were ready to give up.
"We tried and tried to get Cooper to eat and keep milk down, but he just couldn't," says Alyssa. "Dr. Aqul suggested we try an NG tube to help with his feedings when Cooper was about 3 months old, and that's when things really started to turn around."
Cooper began gaining weight and his levels began to even out. His skin color returned to normal, and his parents felt cautiously optimistic that he was on the right track.
After developing ascites, Cooper is placed on the waiting list for a new liver
Then, at around 6 months old, Cooper developed ascites, a buildup of fluid in his abdomen that made it hard for him to eat. After an ultrasound, it appeared that Cooper had a clot in his portal vein, the main vein in the liver. These clots can often lead to severe gastrointestinal bleeding, which would mean Cooper would require a liver transplant. Dr. Aqul planned to start him on a medication to thin his blood while they explored minimally invasive ways to break up the clot, but when a subsequent CT scan revealed there was no clot after all, the plans changed. Instead, Cooper was placed on a diuretic to remove the excess fluid from his abdomen.
"That made an incredible difference," says Cooper's dad, Brian. "The fluid finally went down so he could actually have room for food."
Still, given the small size of Cooper's portal vein and the progression of his liver disease, Dr. Aqul referred Cooper for a liver transplant evaluation to place him on the national waiting list for a liver transplant.
A liver transplant evaluation entails a two- to three-day process to comprehensively evaluate a prospective recipient. During the liver transplant evaluation, the family meets with each member of the multidisciplinary transplant team to ensure that the patient and family have a complete understanding of the prospective treatment course and to address any concerns.
Cooper recovered and returned home, and over the next several months, he continued to be monitored regularly by Dr. Aqul. Soon after his first birthday, Dr. Aqul suggested removing his feeding tube to see how he would respond.
"We agreed to having Cooper's NG tube removed, and he kept gaining weight and his liver tests remained the same," says Alyssa. "It's been incredible."
A thriving 2-year-old and his family give back
Today, Cooper is a "wild and rambunctious" 2-year-old, according to his parents. He is still under Dr. Aqul's care, making regular visits to the Center for Solid Organ Transplant at Children's Health, but other than the large scar across his stomach, there's currently little evidence of the life-threatening struggles he faced as an infant. He remains on the waiting list for a liver transplant in case his condition worsens, but for now, his family is taking it one fun-filled day at a time.
After realizing the immense challenges, both emotionally and financially, that supporting a child with a chronic illness can place on a family, Cooper's family started the PELD Foundation to support other families facing Pediatric End Stage Liver Disease to help give back in Cooper's name.
"We've already been able to support one family that needed help, and we're working with some of the social workers at Children's Health to see how we can help others as well," says Alyssa.
The Pediatric Liver Disease Program at Children's Health offers comprehensive treatment for pediatric liver disease, including the only pediatric liver transplant program in North Texas. Learn more about our program and services.
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