Kayden and Indigo's new lives
Prior to last year, six-month-old Kayden and seven-month-old Indigo didn’t have much in common. They were living their separate lives, with Kayden growing up in Western Sydney and Indigo growing up in Western Australia, but little did they know both children would soon find themselves in the same hospital.
Kayden and Indigo were both diagnosed with Biliary Artesia, a rare liver condition that scars and blocks the bile ducts. Overtime the bile is unable to drain, builds up in the liver and damages it. Both patients underwent the Kasai procedure; Kayden’s procedure was at The Children’s Hospital at Westmead and Indigo’s at the Perth Children’s Hospital. The Kasai procedure is a common first step in managing Biliary Atresia. It involved removing the blocked bile ducts and gallbladder and replacing them with a segment of their own intestine in the hope to help prolong the life of the native liver but unfortunately, the liver condition in both children deteriorated.
Unfortunately, the Kasai procedure wasn’t enough and the condition increased in complexity. At the end of last year, Kayden and Indigo were put on the liver transplant wait list along with 1,600 other Australians but in the middle of a global pandemic, movement on the wait list was agonisingly slow. For Kayden’s mum, Amber, she focused on remaining positive despite the agonising wait.
“He gets sicker pretty much every week we go back to hospital but I just kind of take every week as it comes and try not to think too much about things,” Amber said.
Indigo’s parents, Tim and Emily, had to relocate to Sydney from Western Australia to wait for a liver transplant when Indigo was just five-months-old. Moving to the other side of the country can be difficult enough but moving during a global pandemic posed even more challenges. With the airline industry turned upside down and to avoid their flights being cancelled, Indigo’s parents moved to Sydney in June 2020 to be closer to the Hospital incase there was a last minute organ transplant match.
Thankfully, the phone call both families were waiting for came through and both Kayden and Indigo received their liver transplants at the end of last year. Now 14-month-old Kayden and 15-month-old Indigo are thriving post-transplant and getting back to being kids with both of them being able to celebrate their first birthdays. Both families are forever grateful by the support they received during such a difficult time in their lives.
“The liver team has been a huge all round support for not only Kayden but also myself. They are not just doctors and nurses, they have become like family friends, and we will always be grateful for everything they do for us,” said Amber.
“The Liver Unit became family to us during our time away from home. We are very grateful for their hospitality, all the support and care they've given to us and our little girl Indigo. Every single medical staff we have met along Indi's liver transplant journey has a place in our hearts forever. The liver nurses, nurses and cleaners in the Clancy ward, ICU nurses, social workers, doctors, surgeons and especially Dr Gordon Thomas who carried out the liver transplant are truly our heroes. We cannot thank them enough” said Emily.
Jesse and Luke's story
At just three-days-old identical twins, Jesse and Luke Wilson, were diagnosed with a rare condition called Alagille syndrome. Alagille syndrome is a spontaneous mutation of the Gag1 gene and causes complications in the various parts of the body including the liver. Both boys were put on the transplant list in March 2016 as they urgently needed new livers at the same time.
After meeting with Dr Michael Stormon in their home town in Western Australia, the Wilson family flew to The Children's Hospital at Westmead and underwent liver transplant surgery over 10 weeks. In June 2016, Luke was given his first transplant but unfortunately, due to a complication the organ failed and he was relisted for another transplant.
"My boy was tired. His little body had turned to skin and bone and every ounce was fighting for life. We were losing hope but three nights later - at midnight - our phone rang. A new gift, a new chance, a glimmer of hope," recalled mum, Kylie. Luke's second transplant was successful much to the relief of the family.
Eight weeks later, Kylie and the family went through the same emotional roller coaster with Jesse as his first liver transplant was unsuccessful too.
“Jesse pretty much killed off his new liver within 24 hours. He needed to be re-transplanted, but they had another organ, so he was the next morning,” she said. Thankfully like his brother, Jesse's second transplant went well and he recovered quickly.
Both known for their cheeky personalities, the twins are now 11-years-old and are both athletic and busy living life to the fullest. Though their journey in Hospital had been long with many moments of ups-and-down, the Wilson family are forever grateful of the care they received by the Liver Transplant Unit at The Children's Hospital at Westmead.
"Our twins are modern-day miracles. They are a living testimony of the incredible miracles that can take place today and by the skill of God-gifted surgeons we are privileged to have met".
Alfie was only seven-weeks-old when he was diagnosed with Biliary Artresia. Biliary Atresia is a rare condition in infants where bile becomes trapped and permanently damages the liver. Alfie underwent Kasai surgery which involved passing the blocked bile ducts and gallbladder and replacing them with a segment of Alfie’s small intestine to create a new bile duct system. Transplant Surgeon at The Children's Hospital at Westmead, Dr Albert Shun, operated on Alfie for a total of five hours.
After Alfie's first surgery, there were several complications and re-admissions into hospital, Alfie was officially added to the transplant list in June 2016. When the call came through at 1:30am an early Saturday morning, Alfie's parents, mum Kay and dad Matthew, once again handed over their son to Dr Shun again for his second surgery.
"My husband and I wandered the corridors of the hospital waiting and waiting, but again we were at ease because we knew our baby was in the very best hands. We are so lucky to have access to these people and of course the generosity of the donor’s family to give a truely amazing gift of life to Alfie," said Kay.
Alfie's second surgery took nine hours and was thankfully a success. Since his transplant, Alfie is doing amazingly well with no significant problems. He likes climbing trees, going to the beach, playing with his cars and animals just like any typical four-year-old boy.
"Now we look forward to the future. This journey has had its ups and downs but we are grateful for every day! We will be forever grateful to Alfie's donor and family, Dr Shun, Dr Thomas, Dr Stormon, Dr O’Loughlin, all the liver nurses and Clancy ward. Thank you for everything".
Born in San Diego while her parents were working in the USA Kate was a healthy happy baby, but at just two months old her parents noticed her eyes started to become yellow.
After a visit to the GP and a blood test Kate was taken straight to Emergency where she was diagnosed with Biliary Atresia - a rare disease of the liver where the bile ducts become blocked and prevent the liver from functioning properly.
Kate’s family were told she would need a liver transplant to ensure she made it to her first birthday.
Her mother Clare Burrows said their world completely changed at that point.
“Kate was away from her much loved brothers and dad for many weeks at a time," she said.
"It was very challenging being apart but she was so unwell that we knew we needed to be in hospital.”
Kate was swiftly placed on the transplant list but as each day passed she began to deteriorate event further. After three months on the list the Burrows family received a call to say a donor had been found. Kate had her first liver transplant shortly after but her recovery didn’t go as planned.
Over the next eight months Kate spent more time in hospital than at home – she eventually stabilised enough for the family to make it back home to Australia. But after a few days being back on home soil Kate’s family were told the liver had rejected and she urgently needed another.
Two months later Kate received her second liver transplant at The Children’s Hospital at Westmead and since then has made a huge recovery.
Kate is now a thriving eight-year-old girl who is a passionate swimmer, dancer and artist. She is counting down the days to starting school next year and hopes to be a doctor when she grows up.
Watching their daughter grow up before their eyes, The Burrows family are forever grateful to the donor family for giving Kate her second chance at life.
“Not a day passes where we don’t think of our donor families."
"This experience has changed our whole life and we hope that by sharing our story we can encourage people to talk about organ donation and the life changing impact it has.