Beautiful Wiki was born in Rotorua hospital in 2021.
Everything seemed fine and her mum’s pregnancy and labour had been normal. However, her family did notice that she was a little jaundiced when she was born. When they asked the nursing staff at the hospital about this, they were told to put her in sunlight as jaundice can be normal for newborns. Thinking nothing more of it, Wiki was taken home once she and her mum were discharged.
Everything appeared normal until her six-week jabs, when the nurse caring for her noticed that she was still jaundiced. Knowing that this was not normal, the nurse escalated her concerns, resulting in Wiki and her family being sent to Starship for evaluation. An investigation into why she was still jaundiced was commenced, with test results unfortunately, confirming that Wiki had liver issues.
Starship advised Wiki’s family that she should have a Kasai procedure done to allow her to grow and hopefully become stronger before anything more drastic had to happen. If successful this would help prolong the life of her already failing liver so that she would not have a liver transplant until later in life, Mum and dad agreed to the procedure and the operation went smoothly.
Initially, the family spent three months in Starship and Ronald McDonald House while Wiki was recovering. They were finally able to return home with their little daughter in about August 2021. However, from then on, they were again continually in and out of Rotorua Hospital with Wiki being admitted for other complications. The family had to spend Christmas in hospital, as Wiki was struggling so much. They were thankful to get out just before New Year and were able to spend this time together with family.
Happy that Wiki was doing better and had not had to be put onto the transplant list yet, the family decided to live every day one at a time and hope that the Kasai would keep Wiki heathy for longer.
Wiki was able to celebrate her first birthday at home with her family, a wonderful milestone which was celebrated well. About three weeks after her first birthday, however, Wiki was once again going downhill medically. The family were away from home when the worrying sign of blood in her poo was found. They raced their precious girl to Taupo Hospital where they were quickly sent back to Rotorua Hospital and then again flown up To Starship.
As Wiki was due for checkups, and more testing was being done, the family was asked if they wanted to go home to wait, stay in Auckland to wait, or wait at Starship for the results. They decided to stay close to specialised help in Starship. While there, a deceased donor was found and, due to Wiki’s health, the decision was made that a transplant would be best to help her chances of recovery. The phone rang at 3am in their rooms and Wiki’s family were told to make sure she was ready. Tests were done to make sure the liver was suitable for her, and then at 11am that morning, Wiki went in for her transplant. Everything went well and she was out of surgery at about 10pm that evening.
Once again, the family were in Starship for a further three months while their little girl recuperated. The doctors and medical professionals kept an eye on her and made sure her body did not reject her new liver.
Finally, Wiki was discharged and allowed to go home in September 2022. Karen and Dayne thought their family and little girl were at last back on track and were ecstatic about being able to take her home again. They were able to celebrate a few family events once back home, but unfortunately only a month and a half later, Wiki was going downhill once again.
Her family rushed back to Rotorua Hospital, but tests did not show what was wrong with her. They were once again sent back to Starship for tests and specialised medical care. Wiki’s stomach started to become swollen, and Karen was concerned, asking for Wiki to be checked. Tests confirmed that Wiki had eleven holes in her small bowel. She was rushed to PICU and then an emergency surgery the next morning as the doctors tried to repair the holes. As she was so sick, Wiki had to stay in PICU for a while.
It was at this time that the family received the devastating news that tests had confirmed that their baby girl had cancer. This lymphoma can be a side-effect of transplants. Wiki was put into the cancer ward at Starship and bravely endured six rounds of chemo starting mid-December and lasting until the start of July 2023. The first two rounds were very strong and took a toll on her body, thankfully the last two were gentler. Due to such a low immune system because of the chemo, Wiki was closed in her rooms at Starship to protect her from germs and viruses which her body could not fight.
Finally, just a few weeks ago, everything settled down and Wiki was again able to return home with her family. She has had to fight off a round of influenza since then but is now back on the road to recovery.
We wish you and your family all the best, Wiki. Stay strong and keep growing and thriving.
Wiki’s parents Dayne and Karen have been through so much over the last 3 years, caring for their precious daughter. They both send a huge Thank you to the kind donor and whanau, who provided a new liver, a special ‘gift of life’ at a time when they were also suffering grief and loss.