Kaewa

Kaewa is an IDFNZ patient member living in Lower Hutt, Wellington.

Born on the 7^{th of} November 2022, Kaewa arrived after a normal birth. He was a handsome, smiling baby who settled well for his mum Kyana. With a good birthweight and healthy appetite, Kaewa was a happy and content baby. All seemed to be going perfectly.

When Kaewa was born, there was a small amount of jaundice, which was thought to be normal baby jaundice and was expected to pass in time. However, after 8 weeks, Kyana was concerned that the jaundice was still there, and in fact seemed to be getting darker and more pronounced. She took her concerns to her local family doctor, who immediately ordered a split bilirubin blood test the same day. Alarm bells began to ring for Kyana when she received a call from her doctor that evening, to take Kaewa to Hutt hospital for admission that night.

 Kaewa was medically examined, by doctors at the hospital and contact was made immediately with the Starship team. By the next morning Kaewa and Kyana were on a plane making their way to Auckland, for admission to Starship hospital for assessment.

The Starship liver team completed further tests and were soon meeting with Kyana, explaining that Kaewa had a diagnosis of biliary atresia. This is a rare liver disease, a defect in the bile ducts of the liver, which results in the bile ducts blocking and bile flow building up and causing inflammation and scarring of the liver. The prolonged jaundice and subsequent split bilirubin test result were indications that all was not well and biliary atresia likely. Other tests including an operative cholangiogram confirmed the biliary atresia diagnosis.

Within a few days, Kaewa was taken into theatre for a Kasai procedure; a surgical procedure to remove the bile-flow blockage and enable the bile to drain from the liver to the gut. Immediately after the Kasai surgery, Kaewa’s skin began to clear, and the jaundice faded.

Kaewa was then discharged form Starship after just a few weeks, back to the care of his Wellington paediatric team. He had regular outpatient appointments and blood tests. The Starship team were in close contact, and his surgeon visited to assess him. His condition was initially stable.

However, in August 2023 Kaewa got sick. He was generally unwell and developed a persistent cough. Unfortunately, his liver was found to be playing up and his blood test results became abnormal. Kaewa developed a swollen tummy and was very uncomfortable, he was having difficulty in breathing and couldn’t easily move around at this point. He had regular trips to Auckland for various tests and biopsies at this point. Incredibly he still had a good appetite and maintained his weight and growth milestones, his skin was clear and there were no signs of jaundice, but beneath all of this, his liver was sadly deteriorating quite quickly.

Kyana was advised that Kaewa would need a liver transplant. Devastating news for her to hear. This was a very scary time. Kaewa was assessed and placed on the liver transplant list. The family rallied and were keen to be evaluated to find a live donor, but the situation quickly escalated.

Just two days after celebrating Kaewa’s first birthday, Kyana received a call at midnight from the transplant coordinator advising that a suitable liver had been found. Kaewa was flown to Auckland the next morning and underwent liver transplant surgery that evening. Kyana travelled with him but was herself unwell. Her mum Chevaun, Kaewa’s dad and other family members joined them that day, and assisted Kyana with support.

Amazingly, within just a few days, Kaewa was sitting up and full of smiles. He recovered very quickly, and his wee body healed well. The family spent Christmas 2023 and the New Year period, in Starship and Ronald Macdonald house, with wonderful support from local friends and family members. Kyana was relieved that Kaewa was doing so well, he is such a happy little man, always on the go exploring. Such a brave and courageous boy.

Eventually Kaewa was discharged back home after spending around 10 weeks in Auckland. He is doing well. His health is being closely monitored, but he is happy, chatty, and living a full-on life. Kyana would like to thank everyone for their kindness and support through this journey. A special shout out to Meredith, Lisa and Christie, as the nurse specialists who even today closely monitor Kaewa and will continue to do so in the coming years.

 Kyana is keen to spread the message about Beware yellow, to alert other parents and families to be cautious about jaundice in babies, and to support IDFNZ raising awareness about the early warning signs of paediatric liver disease.

Thank you for sharing your story, Kyana, you and Kaewa have been through so much. We are privileged to have been allowed to walk alongside you.

 Aroha,

 IDFNZ.