Photography: Frances Juriansz
When Lynn and Jason Hampson first saw the hint of yellow in their four-month-old son’s eyes in the winter of 2008, they didn’t think too much of it. The young parents assumed it was jaundice, a common illness that would pass with a little time under the hospital lamps. Instead, the colour spread. By the end of the week, Jason says Logan’s entire body was as “yellow as a Simpsons character,” and his stomach had filled with fluid, becoming distended.
Logan’s blood work revealed he was experiencing liver failure, but his doctors had no idea why. The family was transferred from their local hospital in Hamilton to department 6A-the transplant wing-in SickKids hospital in Toronto. The Hampsons didn’t know it then, but it’s where they would spend much of the next four years, a place they would ruefully come to call their home away from home.
As doctors began running tests on Logan, Lynn stayed at the hospital while Jason worked in Etobicoke, repairing rails for CN Rail all day before returning to sleep with his family. The tests came back negative, and after three weeks Logan began to recover. His energy returned, and his ailment seemed to disappear as mysteriously as it had come.
A year later, in January 2009, Logan got sick again. It was subtle, but something about the little redhead seemed off. The way the normally rambunctious toddler sat on the family couch-motionless, his eyes peering around the room-would have looked normal to a stranger. To his father, however, it set off a wave of dread.
Logan was once again transferred from his local hospital to 6A, where he soon improved, then fell ill again. In March, his belly swelled dramatically with fluid. This time, doctors stepped up their examinations. Logan was subjected to EKGs, echocardiograms, ultrasounds and MRIs. Every few days, the doctors would test for a new, scary-sounding disease. Lynn would put her son to bed, then surf the Internet to read up on its symptoms. She’d call up Jason the next day and share her worries. “They’re testing for Niemann-Pick,” she’d say. “Fatal by the age of three.”
Still, the doctors were stumped. “Sometimes, in pediatrics, we deal with diseases that have not been described fully,” says Yaron Avitzur, a member of the SickKids gastroenterology team that worked with the Hampsons. By now, though, it was clear that whatever was wrong with Logan was serious. “They said, ‘We’re afraid that the next time he gets a virus, it could be fatal,'” says Lynn.
Photography: Frances Juriansz
That’s when the doctors told Lynn and Jason what the parents had been dreading: Their 18-month-old boy would need a liver transplant.
Founded in 1986, the liver transplant program at SickKids-the largest in Canada-performs 12 to 20 transplants for children every year. With the wait time for a compatible organ from a deceased donor extending anywhere from one month to three years, finding a living donor is the best chance for a child with liver failure.
But no doctor wants to pressure a parent-often in the best position to be a match-into making that kind of decision. “You talk about becoming a donor in a very careful way,” says Avitzur. “You bring up the possibility, explain what the requirements are.”
While fatalities are rare, a liver transplant is still major surgery. As soon as the idea of a transplant came up, Lynn immediately volunteered. Having brought Logan into the world, she felt whatever illness he was suffering from was her fault. Her guilt, however irrational, made the decision simple. I broke him, she thought. I should be the one to fix him.
Over the next two weeks, Lynn went through the tests required to make sure her liver could be successfully divided. Her blood type matched, and after the mandatory battery of tests to ensure she was physically and mentally prepared for surgery, doctors gave the go-ahead.
The night before the operation, Lynn and Logan tossed and turned in their little room in 6A. At three in the morning, they gave up on sleeping. Lynn took Logan down the hall to the playroom and pushed cars around the floor with him until the sun sparkled on the glass towers outside the window. Then Lynn went across the street to the Toronto General Hospital. Doctors cut a small lobe of her liver, packed it in solution and brought it to Logan at SickKids. There, a different team opened Logan, removed his failing organ and replaced it with his mother’s healthy one.
In the waiting room, Jason tried not to think he could lose the two people he loved most in the world.
Photography: Frances Juriansz
A week later, Logan had a new liver and a whole new life. The transplant had worked perfectly, and the toddler was full of energy. While Lynn recovered from her surgery, Logan ran down the hallway, jumping off the playroom steps. “Jay, stop him!” Lynn yelled. “He’s fine,” Jason said. And, amazingly, he was. The kid was a whirlwind, tearing around their home, demanding that his parents play floor hockey with him. “If you had to pick a kid to have liver failure and get a transplant, you would pick Logan,” Lynn says.
But while Logan recovered, the mystery of his sickness remained. Biopsies and blood samples were sent to scientists around the world, but with no clear results. After dozens of tests, the major genetic illnesses were ruled out. A few months later, when the Hampsons asked about the dangers of having a second child, doctors said there was nothing to worry about.
On May 25, 2011, Alyson Hampson was born, a tiny pale thing with fair hair and big green eyes. She was slightly premature but, as far as the doctors could tell, perfectly healthy. Still, it was impossible for Jason to keep the worst-case scenarios out of his head.
In November, when she was just six months old, Alyson came down with a slight fever. Lynn and Jason took her to their local hospital in Hamilton, where doctors said she had a respiratory virus. It was a common illness, something most infants go through, and later that week Alyson seemed to be better. As the family was preparing to head back home, Jason looked into his daughter’s eyes and saw what he’d been fearing most-the faintest tint of yellow.
Lynn couldn’t believe it. They turned on all the lights in their shared room and threw open the blinds, letting the sun stream in so they could get a good look at their daughter’s eyes. Was it real or just paranoia? When the tests came back, there was no doubt: Alyson’s liver enzymes were up and rising higher by the day, a well-known sign ofliver disease. Whatever mysterious illness had attacked Logan was after his sister.
Alyson’s sickness resembled Logan’s, but in fast-forward. In three days, Alyson got all the tests that Logan had been given over a year and a half. While the boy’s illness had progressed in fits and starts, for Alyson it began badly and quickly worsened. On December 12, doctors told the family what they already suspected: Alyson, like Logan, would need a liver transplant.