After almost a lifetime on dialysis, 3-year old Zaccari gets a transplant

Since he was nine weeks old, Zaccari Reid of Moncton has needed a new kidney, and after years of waiting, the three-year-old got one Friday. 

Zaccari has a rare kidney disease called congenital nephrotic syndrome and has spent most of his life on dialysis.

He and his mother, Ashley Barnaby, have travelled back and forth between their home in Moncton and the IWK Health Centre in Halifax three times a week since June 2016. 

'He's sitting up in his bed, he's all silly, and goofy and playing with everybody- Ashley Barnaby, Zaccari's mother

"It's going great," Barnaby said of the transplant.

Barnaby received the life-changing news last week that a kidney was available.

"We got the call on Tuesday at 8:52 in the evening," she said. "It was very exciting but scary at the same time because I do know the surgery is a pretty big one, but I also didn't want to get my hopes up."

A few years ago, Barnaby said, she was told a match was ready for Zaccari, but it turned out the kidney couldn't be used. 

"This time around I was more prepared mentally and didn't want to get ahead of myself."

This time, while walking around the hospital Barnaby would meet words of congratulations with, "I'll believe it when it happens."

But after 4½ hours of surgery on Friday, Zaccari will get a chance to live what his mother calls, "a new normal."

The kidney transplant went well, and only five days later, he is almost back to his usual self, Barnaby said.

"He's sitting up in his bed, he's all silly, and goofy and playing with everybody that is in the room."

In isolation at IWK

But Barnaby knows there is still a long road ahead.

The family will stay in isolation at the IWK for another four to six weeks. After which, they'll return home to Moncton. 

Barnaby said a transplant is not a cure but the best treatment for kidney disease. Zaccari will be on immune suppressants the rest of his life, but his trips to the hospital will be much less frequent.

"For pretty much the last four years, we've been pretty steady at the hospital, having to go for visits, having to go for checkups, having to go for treatments."

She estimates she and Zaccari have travelled 120,000 kilometres back and forth to the IWK's pediatric unit since she bought the car in 2017.

Promotes organ donation

To maximize her drive time and raise awareness about organ donation, Barnaby turned her car into a billboard.

"I got a nice flashy decal for our car, that read: 'Be someone's hero. Be an organ donor.' "

While celebrating her son's chance at a "a normal childhood," Barnaby is quick to acknowledge that another family is mourning.

"I just want to send out my deepest sympathies to that family that had to suffer the loss, but in another way I want to thank them for taking the time to register and to become a donor." 

Already life-changing

Barnaby is also thankful for the staff at the hospitals Zaccari has been to. Before he was born, she said, she had little knowledge of medical procedures but staff at the IWK taught her how to care for Zaccari's condition.

"Now I can take his blood pressure, I know how to take his vitals, I know what his normal range is," she said. "If something is going on, I know what to look for and they get you so prepared."

And Barnaby said she's looking forward to what the future holds.

"It's already life-changing for us, even in the few days that it's happened."