Nearly 16 years after Darryl Wallis had a rare, life-changing transplant operation for four organs, his five-year-old son had to undergo the same procedure just two weeks ago. Now, he’s calling on more Ontarians to consider registering to become organ donors.
At the age of one, Wallis was diagnosed with hollow visceral myopathy, a rare type of intestinal pseudo-obstruction that would stop his digestive system from moving food properly or absorbing nutrients. For the first 20 years of his life, Wallis had to eat and drink intravenously until he found a liver, bowel, stomach and pancreas transplant from a donor.
The four-organ transplant recipient, who went on to become a pharmacist, said doctors told him his rare illness would not be genetically passed down to his children. But at the age of one, his son Owen began to show similar signs: bloated abdomen, frequent vomiting and not being able to grow or gain enough weight for his age.
“It wasn’t until genetic testing came out essentially that we confirmed what we hoped wasn’t true and that he did have the condition,” Wallis told CBC Toronto.
Wallis said his son suffered an acute septic episode at the age of two when his intestinal tract became infected, spreading throughout his body, and his small bowel had to be removed. That’s when the toddler was put on the organ transplant list.
“It’s like a kick to the stomach,” said Jamie Wallis, Owen’s mother.
“I knew through Darryl and his mom … everything that they’d been through throughout his childhood and his adult years and how hard his life was. And then to picture my son, going through that same life … it was terrifying.”
After waiting roughly two years, the young boy had the 12-hour operation to receive the four organs on July 30 at Toronto’s SickKids hospital, and is doing better than expected, his father said. The parents don’t know who the donor was, he said.
“All we know is that somebody would have been about his size because he is only five years old and quite small for his age,” he said.
Transplant was the only life-saving option, says doctor
In November, it will be 16 years since Wallis received the life-saving transplantation at Toronto General Hospital in 2007. Dr. Anand Ghanekar, a transplant surgeon at Toronto General Hospital, said without the transplant, Wallis wouldn’t have been able to live, with no other alternative options.
“For many people, the only option is an organ transplant from a deceased donor,” said Ghanekar, who specializes in living and deceased abdominal organ donor transplantation in adults and children.
Before going on the transplant wait list, the father had gone into end-stage liver failure after having to rely on IV fluids for 20 years.
“The doctors essentially told my family, we’re going to try to keep him alive long enough for the transplantation technology to advance far enough,” Wallis said.
Wallis said a lot of the same doctors and nurses who operated on him in 2007 were involved in his son’s transplant operation 16 years later.
“Coming back here and seeing my old doctors and nurses, it was a level of comfort … just knowing that the care he was getting was what I had received, so you’re optimistic about the outcome,” Wallis said.
Ghanekar said Toronto General and SickKids have only seen several cases of the rare hereditary condition over the last few decades. While Wallis had a difficult initial recovery, Ghanekar said the progress he has made speaks to how life-changing the operation is.
“[Darryl] has made an amazing recovery and has really demonstrated the power of organ transplantation. [It] has totally saved his life and allowed him to have a really excellent quality of life,” Ghanekar said.
“Without an organ transplant, none of that would have been possible.”
He said in the case of children, it’s crucial for more Ontarians to be aware of the impact of organ transplants.
“There’s a great importance to make as many opportunities for transplant as possible for children because they are disproportionately affected and disadvantaged in some ways in terms of the waiting time,” Ghanekar said.
More than 1,500 Ontarians on wait list
There are more than 1,500 people waiting for organ transplants in Ontario, according to the Trillium Gift of Life Network, a government agency responsible for the province’s organ donation system.
The family hopes that by sharing their story, they can encourage more people to give the generous gift of organ donation.
“Just one donor can provide organs for up to eight different people. So it’s really an amazing gift to be able to give,” Wallis said.
“Once you’ve lived your life, once you’ve done everything you know, to be able to carry on and provide that second chance for a lot of people is just an amazing thing.”
There’s so much hope now for his future,– Jamie Wallis, Owen’s mother
As for Owen, his mother says he is doing well post-surgery and has already been able to walk again.
“There’s so much hope now for his future,” Jamie Wallis said. “Seeing him after his transplant … you feel like he’s got this, like he’s going to have all of these milestones that we hoped he would have in his life. Before the transplant, we didn’t know that would be the case.”
“The guy’s a little firecracker. He’s not going anywhere anytime soon. He’s going to make the most out of this life and he has a lot of fight in him and a lot of drive.”