A complete stranger saved my life. Fifteen years later, another one saved my son
As a child, I found out I had a rare disease and would need a four-organ transplant. This past July, my son had the same life-saving surgery
I was born with a rare disease called hollow visceral myopathy, or HVM, which prevents my digestive tract from functioning properly. For the first 20 years of my life, I was unable to eat and barely able to swallow. My stomach couldn’t absorb nutrients, and food didn’t move into my intestines as it should. At six months, I stopped gaining weight and had frequent vomiting and diarrhea. I developed a distended abdomen, a common symptom in malnourished children. Eventually, when I was just over a year old, doctors diagnosed my HVM and I was put on a special feeding regimen through an IV drip called total parenteral nutrition (TPN). I had a permanent IV line inserted into a large vein in my chest, through which I was fed bags of a liquid nutrient solution formulated to my body’s needs. Without this, I wouldn’t have been able to survive.
When I received my diagnosis, in 1986, there were very few documented cases of HVM, and very few patients had received the massive transplant surgery I would eventually need—a replacement of my liver, small and large bowel, stomach and pancreas. Given that HVM affects these essential organs, transplant surgery would likely be my only option. Most of the patients who underwent surgery eventually died because the medical science was not yet advanced enough, so when I was very young, it was deemed an unnecessary risk. My best chance was to stay alive long enough for medical advancements to make surgery a safer option.
With TPN, I was able to have something resembling a normal childhood. I was physically capable of doing the same things as most children. I went to school. I played baseball. At mealtimes, I’d sit with my family or my friends, but I wouldn’t eat. Instead, from 6 p.m. until 8 a.m. the following morning, I plugged in to my IV drip. I had to stay home every evening and through the night. The farthest I’d venture was downstairs with my IV pole to watch a movie or spend time with my family. It wasn’t easy to watch everyone in my life enjoy regular food. I read cookbooks voraciously as a child, fantasizing about how the different flavours tasted and miming holding the foods in my hands and taking bites.
But I was fortunate too: I had wonderfully supportive parents. My mom raised money for my care through local organizations like the Lions Club and the Rotary Club. Whenever she came with me on extended hospital stays, my dad looked after my siblings at home. My parents took us on family trips in the summers. One year, we went camping in Algonquin—IV pole and all. My mom asked the park rangers to store my IV solutions in their cold facilities and found sites to charge the pumps needed to run TPN.
But, as I got older, the restrictions increased. For medical reasons, it was dangerous for me to play most organized sports, especially ones with contact. I couldn’t have an after-school job because it would interfere with TPN, though I later managed to work during summers in high school. Outside of HVM, I was relatively healthy, but a new threat was looming. TPN, the very thing that had been keeping me alive, was slowly killing me. Although the IV feed was necessary, there are major risks that come with long-term use of TPN. I contracted numerous infections over the years because of bacteria or viruses getting into my bloodstream through the IV. Sometimes a line would break, leaving an open IV in my body and allowing blood to spill out. This happened a couple of times while I was sleeping. The first time, my parents entered my room in the morning and were horrified to find blood pooling around me.
But these complications were nothing compared to the big one. Over time, TPN causes liver failure due to the excess calories in the feeding solution and the specific lipids, or organic compounds, it contains. By my late teens, I was on medication to slow the process. But, when I was in university and living on campus at the University of Toronto, I became visibly jaundiced. My liver was failing. I needed surgery.
When it comes to organ transplants, you’re always taking a chance. Your body might reject the new organs. You’ll be at a greater risk of infection for the rest of your life because of the immune suppressants you’re required to take. And there are surgical risks, like pneumonia. But, with my liver failing, we made the decision with my doctors to go ahead with the surgery despite the risks. There was no other option.
You don’t get a lot of notice before an organ transplant. We got the call late on November 25, 2006, that a donor had been found for all four of the organs I needed. My surgery took place the next day at Toronto General Hospital. After 20 years in the medical system, I was keenly aware of the risks and nervous for what would be the biggest procedure of my life. But, in a way, it was just another day for me. I was used to putting my life in the hands of doctors.
The procedure lasted 12 hours. The organs were successfully replaced, and I started out on the long road to recovery. But that road ended up being a bumpy one. After getting treated for a painful post-op infection, I seemed to be back on track. It took about two weeks for me to be able to sit up and three to four weeks to walk around the unit. I was discharged shortly before my 21st birthday, in late January.
Within a month, though, I started experiencing concerning symptoms—shortness of breath, wheezing, fatigue. X-rays revealed that there was fluid around my lungs. The condition is called chylothorax, in which lymphatic fluid builds up and presses against the lungs. I was readmitted to the hospital and spent two more months there. For weeks, doctors tried various treatments, including a return to TPN and inserting a tube into my stomach to allow me to ingest liquid food. It was a very frustrating time for me. I was healed from the surgery and ready to move on with my life, but my lingering symptoms were preventing me from doing so. Eventually, after two months back on TPN, the chylothorax went away, and I was able to go home at the end of April 2007.
For the next year, I continued to receive food through a tube connected to my digestive system. But, after that, I was finally able to eat anything I wanted, whenever I wanted, for the first time in my life. I don’t remember exactly what I ate first, but I started with simple foods that are easy to digest, like rice and toast. It was exciting but also nerve-wracking. To this day, I still have some difficulty swallowing, so eating takes longer for me than for most people.
I finished pharmacy school at the University of Toronto in 2011 and started my career as a pharmacist. I’d always known that I’d work in the medical field because it had defined so much of my life, and pharmacy seemed like a good fit. Pharmacists sit in the middle of the medical system—I get to do a lot of detective work and problem solving, which I love. It gives me a chance to help people and be a part of the same system that saved my life.
Life went on in other ways too. I met my wife, Jamie, in 2012. I was working as a pharmacist at a Shopper’s Drug Mart in Sarnia, and she was working in the front of the store. At the time, Jamie had a two-year-old daughter named Olivia, and after we got married, in 2014, we decided to have another child. I underwent testing to make sure I didn’t carry any of the genes known to pass down HVM, and the tests came back negative.
In August of 2016, our son, Owen, was born. With both Jamie and me home on parental leave, life was chaotic, but we managed comfortably. Olivia loved her little brother, our families were thrilled and Owen was a happy, smiley baby.
After about a year, however, his health started to decline. He’d always been small, but he wasn’t gaining weight. He could eat small amounts of solid food but never anything substantial, and he drank mainly specialized formulas. We tried one that was hypoallergenic and lactose free and another with proteins that were already broken down to help with digestion. The specialists we saw had various guesses, but doctors couldn’t nail down the root of Owen’s symptoms.
Nobody, including me, suspected it was HVM—it’s very rare, and I wasn’t carrying any of the known genes—but one of our doctors had read about a new gene connected to the disease. I went to Mount Sinai Hospital, where the genetics team ran more tests on me. The results showed that I had this gene. And, with Owen’s symptoms becoming more and more familiar, the doctors eventually made their diagnosis.
If you’ve dealt with serious health issues, you know the monotony of doctors’ visits, hospital waiting rooms and endless tests. It was one thing for me to experience those things, but dealing with them as a parent was much, much worse. It was heartbreaking to know that my child was sick and there was nothing I could do to make it better.
In early 2019, things reached a crisis point when Owen had an acute septic episode. His abdomen had become very distended, just as mine had, and he was in extraordinary pain, crying, screaming and writhing in discomfort. We took him to the hospital in Sarnia, where, after some tests, doctors came to the conclusion that pressure from his stomach had pushed his intestines up toward his lungs. He was rushed to another hospital in London, where a team of more than a dozen people operated on him. They performed surgery to decompress his bowel and stomach, removing some of the air to give the area a chance to heal. He was in the ICU for several weeks while doctors tried to figure out what to do next. Ultimately, they had to remove most of his small and large bowel. He couldn’t eat, drink or absorb nutrients. And so, just like me, Owen had to go on TPN.
It was an incredibly difficult period for Jamie and me. The weeks after Owen’s surgery were the worst of my life. I felt helpless sitting in the ICU, sick with worry. But, once Owen settled into the TPN routine, things improved. He was happier and more comfortable, and he began to gain weight.
In the summer of 2020, Jamie and I made the difficult decision to put Owen on the organ transplant list. Unlike me, Owen would have trouble living for years on TPN. Without a bowel of any kind, he couldn’t get hydration outside of an IV. And, if he had any issues with his line, he might be completely unable to receive food or hydration, putting his life in imminent danger. He was more fragile than even I had been.
After a couple of years of waiting, Owen went to SickKids on July 28, 2022. At age five, he was doing well, but it’s best to receive an organ transplant when you’re healthier. Two days and many tests later, Owen had the same surgery I’d had 15 years earlier. It was a holiday, and we were told the procedure might take longer than usual because the hospital had less staff. Doctors told us that no news was good news, but we spent the day pacing nervously around the hospital waiting room. We tried to stay busy by keeping our families updated. Finally, after 12 hours of unrelenting anxiety and fear, the surgeon came out to tell us that Owen’s procedure had been a success. I was dizzy with relief.
Owen’s recovery has been smoother than mine. He’s still in the hospital and taking a lot of medication, but he’s a little bit stronger every day. He has a nasogastric tube in his nose that’s now feeding his new stomach—it’s the first time in two and a half years that he’s had real food. The doctors are slowly tapering him off the TPN as he gets more regular nutrition. He’s up and moving around, treating it like any other hospital stay he’s had. Jamie is living in a nearby Ronald McDonald House with Olivia. I had to return to Sarnia for work.
Still, Owen isn’t out of the woods yet. We don’t know if he’ll have complications in the future, and his continued health isn’t a guarantee. But, after a couple of months of school through the Ronald McDonald House, the hope is that Owen will be able to come home and return to his regular school. We’re glad to be putting this challenging chapter of our lives behind us.
After everything I’ve been through, I feel uniquely qualified to talk about the importance of organ donation. There are about 1,600 people on the wait-list in Ontario right now, and every donor can make a huge impact on someone’s life. And, while I understand that the decision is a personal one, I can say from experience that the gift of life is incredibly powerful. One day, we may send a letter to the family of Owen’s donor through the health care system—they can choose whether or not to receive it. We sent several letters to my donor’s family after my own surgery, but we never received a reply. I imagine it was an extremely painful time for them, and I understand why they didn’t respond.
I still talk about organ donation as much as I can, though it can feel a bit taboo. There are occasions when organs are donated by those who are still living, but more often it’s a conversation about death and the loss of a loved one. I encourage people to make these decisions now, when those conversations may be easier. It’s not just about the person you might save but about all of the people who love them, the parents who get to keep their child—the ripple effect. I owe my life and my son’s to two complete strangers. I am eternally grateful.