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Liver transplant: Reid's story

Reid's pediatrician missed his diagnosis, even though he presented with all of the symptoms. We trusted her opinion as we had been going to her for four years. At his initial appointment, his pediatrician stated jaundice in newborns is common and to place him in indirect sunlight during the day. He attended all appointments as required, at 4 days old, 2 weeks old, 2 months old, and he even attended a sick visit at 2-and-a-half months with a nurse practitioner. Nothing additional was said about his jaundice, so we assumed it was normal, or that he needed more time in the indirect sunlight. At the urging of his primary child care teacher, we talked to his pediatrician about his still being jaundiced. Blood tests were ordered. Two days later we were in her office discussing the results, which prompted a trip to the hospital for another blood test and ultrasound. Within an hour we were told to go straight to Texas Children’s Emergency Center to be admitted for an evaluation and possible surgery because the ultrasound was unable to detect a gallbladder and bile ducts. He had a liver biopsy the next day. On the third day, we learned he was unable to have the Kasai procedure as his liver was already too scarred (cirrhosis), and he was listed for transplant. He was 3 months old. Over the following 10 months we were only out of the hospital for a total of three to four weeks. Reid set new records while waiting for his liver, although not all of them good. He had 13 "dry runs" before his transplant; number 14 was our lucky number. He was the youngest recipient of the TIPS (transjugular intrahepatic portosystemic shunt) procedure at Texas Children’s, which was performed only as a last resort to save his life. Thanks to his awesome dietitian, he also lovingly became "the fattest BA baby" ever seen. It was a long, hard road with many ups and downs, but thanks to the great team at Texas Children’s, we all survived it and Reid is doing better than we ever thought possible. That first day in the emergency center we met Dr. Sanjiv Harpavat. He gave us the suspected diagnosis of biliary atresia, with an excellent overview of what it was and what was to come over the next year. He encouraged us not to focus on the past, but hold on to the future to make it through our journey. We held on to all of his words from that first day throughout our time spent at Texas Children’s, and thanks to his words we were able to refocus when Reid's situation seemed hopeless. When Reid was born, there was not a "test" for biliary atresia, but now there is, thanks to Dr. Harpavat.

Heather Burrell, mother of patient