On Sept. 19, Mighty Myles got the gift he has been waiting his whole life for.
Myles Beaulieu, the one-year-old Guelph infant, received a life-saving liver transplant after spending months at Toronto SickKids Hospital.
“He’s doing really well,” said mother Emily Vokey. “He is white. He is no longer yellow, his skin is no longer yellow, his eyes are no longer yellow for the first time in his entire life. He doesn’t have as big of a belly anymore, he doesn’t have the veins all over his belly anymore.
“He looks incredible, absolutely incredible. Night and day, I would say.”
Born Aug. 25, 2023, Myles was diagnosed with biliary atresia six weeks later.
He spent the first few months in and out of hospital, undergoing procedures and surgeries.
After he caught a cold in the spring, he was taken to the ER. The family has been at SickKids since May 25, waiting for a liver transplant.
In late August, Vokey was first to learn the news everyone was waiting for.
A secure phone app, which has access to Myles’ medical records and notifies her of upcoming appointments, alerted her of an appointment on Sept. 19, a target date for transplant.
“I thought wow, I was excited obviously,” she said thinking back to that phone ping.
“I actually bit my tongue and didn’t tell anybody because I didn’t want it to not be real. I wanted to actually wait until I heard it from our team, like yes, this is officially happening.”
The excitement was mixed with a bit of fear. Vokey admits it was hard to keep calm, but she held it together.
“The day of the transplant, I had a lot of different thoughts come into my mind, mostly just tried to distract myself and I’m thankful that we had family there with us while we waited,” she said.
The procedure took about 14 hours to complete.
She said the surgeons were happy with how things went, but the weeks that followed didn’t come without complications.
Vokey said Myles had some breathing issues, developed pneumonia, his lung collapsed, he had a respiratory attack shortly after his breathing tube was taken out and needed CPR.
“He really kept it interesting, and kept everybody on their toes,” she said.
Myles had the tube put back in, but had it taken out last Thursday. A day later, after three weeks and on Myles' dad Cody's birthday no less, he was taken out of the ICU.
"It was a nice happy birthday to him," Vokey said. "A good gift."
The family has continued to live at Ronald McDonald House in Toronto while Myles remains at SickKids.
How long that stay is remains unknown.
“It’s hard to say, it really just all depends on Myles and what his body wants to do,” Vokey said.
With a new liver, Myles no longer has biliary atresia – "which is so exciting to say," Vokey remarked – and while the days continue to push on, she’s happy to see Myles is smiling and grinning, though he hasn't been able to make much noise as of yet.
His incision is still open, but is being covered and treated by SickKids doctors.
“He’s very expressive,” Vokey said. “He’s got more energy now than he did going into the transplant, and he had a lot of energy back then too. He’s got a really good demeanour, even more so than he did.”
The liver donor, Dianne Ritch-Schaeffer, met the family a couple days beforehand.
“A wonderful woman,” Vokey said. “I’m so beyond thankful for her.”
Ritch-Schaeffer – a 44-year-old Guelph elementary school teacher with the Wellington Catholic District School Board and a work colleague of Myles’ great aunt – remembers hearing about Myles falling ill around Thanksgiving last year.
She later learned Myles would need a new liver, and family members being tested weren’t matches.
“I would come home and share with my husband and whatnot, and thinking about this young baby,” Ritch-Schaeffer said.
“In the meantime, I’m a mom of two boys (aged 10 and seven), and they’re very healthy and I’ve never had that concern. Health is certainly something that I think we’ve taken for granted.”
The decision to get tested came as a family, and a number of pros and cons went into it.
Ritch-Schaeffer factored in her own brush with organ donation. Her godfather received a heart transplant over 11 years ago and is now living a healthy life.
Another factor was the recovery time for her: three months.
“You can get through just about anything in three months, and three months is manageable,” she said.
“Here we are being a healthy family. People never know when their health is suddenly going to change, so if I can just recover from something in three months, and that potentially is going to give someone the opportunity to live their life, that was a no brainer for us.
“It just came down to we just wanted this family to have a chance to actually be a family, and for Myles to get a chance to live outside of a hospital.”
Ritch-Schaeffer said after registering through the University Health Network website in mid-July, a number of her follow-up appointments were done online.
“I only had to go to Toronto three times prior to the surgery,” she said.
She found out she was a match, and had the surgery done. Ritch-Schaeffer spent a few days at Toronto General Hospital and has 12 weeks off from work to recover.
There were some nerves, considering it was her first-ever surgery, but she said she’s feeling pretty good.
“Everything that the transplant team prepared me for, I’ve experienced without any of the concerning things,” she said. “It’s been a good healing process. It was better than I thought it would be.”
Ritch-Schaeffer added the healing process has also been manageable because of her family helping at home.
“I feel like we’ve gained a lot out of this process,” she said. “I feel like my children have learned a lot in terms of empathy and compassion and caring for others.”
The liver itself was "beautiful," she remembers one doctor remarking, much to her delight.
Vokey was told “the surgeon who did her surgery said that her liver was one of the most perfect livers he’s ever seen.”
“I really hope it’s everything that they want it to be, so that Myles has the best chance at this,” Ritch-Schaeffer added.
Tears flowed when everyone met a couple days beforehand. Dianne got to give Myles a hug as well.
Vokey said she continues to talk about Myles’ story, and will continue to provide awareness to biliary atresia and living liver donations.
She is on the volunteer committee for the Canadian Liver Foundation, and along with Myles, is now a SickKids patient ambassador.
“It’s nice that we have these outlets – just through our own social media and just talking to people that we know – but also having the Canadian Liver Foundation and now SickKids as well, to be able to share his story for them,” Vokey said.
Ritch-Schaeffer will continue to be an organ donation advocate as well, and looks forward to the next time she sees Myles.
“I hope that once he returns home, I would like to give him another hug, once he’s well enough to have that,” she said. “I’m looking forward to our second hug for sure.”
