Khai's Transplant Journey
In August 2017, Julia Macleod was 15 weeks pregnant with her son, Khai, when she went in for a prenatal ultrasound. At that ultrasound, the medical team told Julia that her baby had gastroschisis, a condition in which the organs are found outside the body, exiting through a hole beside the belly button. This news devastated Julia as Khai’s father passed away while she was pregnant and the thought of losing their baby was her worst fear.
On February 10th, 2018 Khai was born and he spent the first 80 days of his life in the Neonatal Intensive Care Unit so doctors could repair his gastroschisis and monitor him. In April, Julia and Khai were allowed to return home. Only two months later, Khai’s belly started to swell
enormously and become very firm, causing Julia and Khai to be medevaced urgently back to Edmonton Stollery Children’s Hospital.
The medical team there determined that Khai was in end-stage liver failure and would need a transplant. The doctors did not know why Khai’s liver was failing but suspected it may be due to a cyst.
Over the next few months, Julia began the process and testing to become Khai’s living liver donor. The medical team worked tirelessly to control Khai’s fluid build-up, nausea, dehydration, and nutritional needs while trying to get him to grow as quickly as possible so that Julia’s liver could fit inside his little body.
Khai needed to remain an in-patient at the hospital for his medical needs, requiring Julia to stay in Edmonton, away from her home, work, and support networks. Julia remembers her time away from home with difficulty. “Holidays like Christmas and birthdays were the hardest part of being away from home. Being away also took a large toll on my finances and my family’s. Since Khai’s daddy is deceased, my family and I spent most of our savings on needs while being away from home.”
It was during this waiting period that Julia’s social worker told her about the Foundation. The Foundation provided Julia with funding for accommodation, parking passes, groceries, her cell phone bill, and other essential non-medical expenses. “The David Foster Foundation was the only way we survived the financial side of the transplant. Knowing that there is a Foundation so
willing to take that stress off a family during transplant is incredible. Not having that worry is priceless. We will forever be grateful for the Foundation,” says Julia.
After four months of waiting, on October 15th, Julia was told that Khai had a non-constructible vascular system due to his small size, and that the best decision was to be listed for a rare multi-visceral transplant. In his case, this meant being listed for a liver, small bowel, pancreas, and partial stomach transplant. He was listed that day.
Not even twelve hours after being listed for transplant, Julia got a call that there was a donor for Khai. When most transplant recipients wait months or even years for a match, it was incredible that Khai didn’t even wait 24 hours for a perfect match. Thinking back to this time, Julia recalls, “When we got the call that there was a donor, only 12 hours after the surgeons confirmed he was going to get a multi-visceral transplant, we were in complete shock and disbelief that a donor had come up so fast. I immediately felt extreme sadness and empathy for the donor family, as I was so close to losing Khai, I could only imagine how they were feeling. I also felt, and still feel, a tiny bit of guilt that the only way Khai could survive was with a donor’s organs. Lastly, extreme gratefulness flooded every inch of me. To this day I still feel just as grateful.”
On October 17th, after eleven hours of surgery, the medical team informed Julia and her family that Khai’s transplant was completed successfully. He recovered well and stayed in the Pediatric Intensive Care Unit for only six days post-transplant.
For the next four months, Khai remained an in-patient at Edmonton Stollery Children’s Hospital as he recovered. During this time, the medical team was able to confirm that the cause of liver failure had been a cyst. Khai was discharged on March 10th, 2019, but Julia and Khai had to remain at Ronald McDonald House Edmonton for another month for follow-up appointments.
On April 9th, Julia and Khai were elated to return home after nine months spent at the hospital. October 17th, 2019 marks one year post-transplant for Khai. Julia remembers what it was like at this time last year, “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. 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,“He always tries to keep us laughing the same way we kept him laughing while he was at his worst. He is doing amazing. We go for bloodwork every two weeks and the results get better each time. He’s growing and catching up from missed time spent in the hospital wonderfully. We still have to be very conscious of germs and cannot take him to crowded public places quite yet because he is still very immune suppressed. However, we make the best of each day and he’s the happiest little dude most days.”
Reflecting on Khai’s transplant journey, Julia shares one special note of thanks.
“Words cannot 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.”
Photo Credit: No Negatives Required, Kyla Shaw
