My Story:


From Christchurch

Blake was born with biliary atresia, a condition where the biliary system does not develop normally. Blake was born at full term at a healthy 7lb 10oz, he was feeding and sleeping well and was a very content boy.

At two weeks old the midwife noticed that his bowel motions were a very pale-yellow colour and sent him for blood tests. Those blood tests came back showing that his liver was not happy, so we were sent to the hospital. From that stage a week later, we were sent up to Starship Hospital. He had a liver biopsy a week later and at five weeks old he had the Kasai procedure where they create a makeshift bile duct to try and drain the bile from the liver. Unfortunately, that operation failed, and he went into liver failure. At the age of one Blake had his liver transplant. He had a lot of complications post-surgery with a bile leak and further biliary complications needing ongoing PTC drains and a further biliary reconstruction operation. He also developed portal vein thrombosis which is stable currently. At times it felt like we were never going to escape the hospital!! From about the age of five Blake’s health significantly improved and we started spending more time at home and out of hospital which was amazing! We were very privileged to have had some amazing support systems in place around our family while we were in and out of hospital and for that we will be eternally grateful. Blake’s grandparents, the support of other liver families, the hospital staff and the support from the Kids Foundation made such a difference to how we coped and managed throughout our longer stays. We did a lot of play therapy with Blake in Christchurch Hospital and Starship Hospital which has helped significantly with ultrasounds and blood tests, the play specialists are such amazing assets to the hospital, and I encourage all families to utilize their service, especially to try and reduce the medical trauma our kids go through. I really encourage families that are new to the health journey of their kids to reach out and ask, as well as accept help when it is needed and offered. During our longer stints in hospital it was very easy to be dragged down emotionally by everything that was happening so it was really important for me and Blake to get outside when we could, go over to feed the ducks, go for a coffee with a friend, or do some retail therapy down in New Market. There is definitely a light at the end of the tunnel, it is just important to reach out for help if you are struggling, because there are always people around that are more than happy to help in any way they can, as hard as it is to accept it!

Blake is now coming up 15 years posttransplant in April 2023 and is physically thriving. He is a keen basketball player which takes up the majority of his spare time as well as going to the gym. He has never let his health hold him back from participating in activities that give him joy and we as a family feel it is important to let him explore what makes him happy (within reason!!). Blake will be 16 in February and this year has started to transition into the adult service which was initially a very daunting prospect for me after being under the amazing umbrella of the paediatric team! In Auckland the paediatric team in conjunction with the Auckland Hospital team run a Youth transition clinic for the liver transplant children under their care to ease them gently into the adult service. Within that team they have the paediatric doctor, clinical psychologist, nurse practitioner and the adult doctor. The travel co-ordinator in Christchurch Hospital organised all the flights and accommodation for us to attend the clinic once we received the date which made it a very straight forward process. The first appointment was just talking about what the clinic was about, meeting the team and why he was there so that Blake had a good understanding of what the process was going to be from there. The team will see Blake every three months for a year or two prior to fully transitioning into the adult service. The team stated that they will normally see the children in the transition clinic every 3-6 months depending on the individual circumstances and needs. Eventually Blake will go into the clinic room by himself so that he can start taking a bit of responsibility for his own health needs/care, however we will make a judgement call with the team on when that is appropriate. We as a family feel that the youth transition clinic is a fantastic stepping stone into the adult service and will make the transition a lot smoother for Blake. We continue to remain positive for Blakes future health and are so excited to continue watching him grow and develop into his adulthood!