Khai’s journey started when he was born on February 10th 2018. He was born with gastroschisis, a condition in which a baby’s intestines are found outside of the baby’s body, exiting through a hole beside the belly button. Khai spent roughly 80 days in the NICU so doctors could monitor him before he and his mother Julia were allowed to go home. In June, Khai’s belly started to get very large and firm and Julia and Khai were flown back to Edmonton. On June 27th Khai’s doctors discovered that he was in end-stage liver failure.
Julia began to be worked up to be Khai’s living liver donor while the medical team controlled fluid build up, nausea, dehydration, nutritional needs, and tried to get him to grow as fast as possible so that Julia’s liver could fit inside his little body. On October 15th, Julia was told that Khai had a non-constructible vascular system due to being so small and that the best decision for Khai was to get a multi-visceral transplant. On the evening on the 16th, Julia got a call that there was a donor and on October 17th Khai went in for transplant. Over the course of an eleven-hour surgery, he received a new liver, small bowel, and pancreas. Khai did extremely well through the surgery and stayed in PICU for only 6 days after transplant and was discharged from the hospital on March 4, 2019.
Julia says that “transplant has affected our family immensely emotionally and mentally, it was a rollercoaster for all of us. Khai’s father passed away when I was pregnant with him, and the fear of losing Khai as well was my worst fear. Words can not describe how grateful I am for the donor family, they saved not only Khai but the last piece of his father that I have left. We tried our best to stay positive, and always tried to find humour and the bright side in it all. Although it was hard at times, it was the only way we stayed sane through it all. It has brought us all closer to each other and has opened our eyes to a whole new outlook on the medical world.”
Today Khai is doing well. Julia says that “he always tries to keep us laughing the same way we kept him laughing while he was at his worst… we work daily to get him closer to crawling, walking, and the rest of his milestones he’s behind on from being hospitalized so long.”
The Foundation assisted this family with the cost of food, accommodation for the family while they were displaced from their home awaiting transplant, cell phone bills, and transportation. “Not having the financial worry, is priceless. We will forever be grateful for the Foundation.”