The signs of Sunny’s liver disease appeared shortly after she was born.
Unlike her identical twin Vivian, Sunny was jaundiced, had a poor appetite and struggled to keep the little she ate down. At her 10 week check-up, Sunny’s paediatrician told her parents, Trent and Minako, to visit the RCH for tests. A biopsy confirmed that Sunny had biliary atresia.
Relatively rare, biliary atresia is a disease in which the ducts that carry bile from the liver to the gallbladder fail. This bile is then trapped inside the liver, causing considerable damage. The preferred method for treating biliary atresia is the Kasai procedure, which surgically bypasses the failing bile ducts and prolongs the life of the liver. Though it’s a widely successful operation, the Kasai Procedure fails in one third of patients. Sunny was one of them.
“After the Kasai procedure was unsuccessful it became clear that a liver transplant was the only thing that would save Sunny’s life,” said Trent.
“We were devastated. It was a total whirlwind of emotions. We felt confused and powerless.”
Though her original liver continued to function at a sustainable level, Sunny’s doctors decided to complete her liver transplant sooner rather than later.
“The chances of success are higher the healthier a patient is at the time of transplant,” said Professor Mark Oliver, Sunny’s gastroenterologist.
When Sunny underwent her first liver transplant, what should have been a happy occasion soon took a turn for the worst. Sunny developed a blood clot in her hepatic artery, which the liver depends on for most of its oxygenated blood. The liver transplant failed.
“Though the transplant team prepared us well and informed us of the risks, we were in utter shock when the transplant failed. You are never really prepared for that news and we felt like the floor had just dropped out of the room. It was probably the first time that we realised Sunny might not be with us much longer. It was a dark time for our family, but we had total confidence in Sunny’s team and their incredible efforts to get her back on track.”
Sunny’s doctors put her back on the liver transplant waiting list. Just weeks after her first transplant, Sunny received a second. Though subsequent transplants have a lower rate of success, Sunny and her new liver came through with flying colours.
“Sunny was a very sick little girl and would have died without this liver transplant. A huge team of doctors, nurses and surgeons worked very hard to give her the best chance of a long, healthy life,” said Prof Oliver.
Post-transplant, Sunny spent a week in the Paediatric Intensive Care Unit to ensure she had the best care. During this crucial time, Sunny required a variety of medications like antibiotics to combat infection and immunosuppressants to prevent her body from rejecting the donor liver.
Six months on, Sunny needs fewer medications, has gained weight and is doing incredibly well. However, the immunosuppressants she takes to prevent organ rejection make her susceptible to infection and Sunny must avoid high-germ areas like day care centres and public pools for now.
“Sunny’s a real fighter and her recovery has been remarkable. She’s so happy, has amazing energy and a great appetite.”
“Vivian really missed her and was lost without her ‘other half’. It’s great to see them having fun together,” said Trent.
After spending much of her life at the RCH, Sunny will soon graduate to bimonthly check-ups with Prof Oliver. Eventually she’ll come to the RCH just once per year to ensure everything is ok.
Though it’s been a difficult journey, Trent and Minako are grateful to the RCH team for supporting their family every step of the way.
“Mark has been Sunny’s doctor since our first day at the RCH and it feels like he’s been on a real journey with us. He’s such a big part of Sunny’s life and we can’t thank him enough. The amazing liver transplant team performed miracles and answered our many questions gently when we didn’t receive the news we were hoping for. We are so grateful to them. And to the ward nurses who cared for Sunny, we would like to thank you all.”