Life Twice Given: An Unlikely Sacrifice
At 16 weeks, Logan Hampson fell mysteriously ill. Four years later, his baby sister, Alyson, developed the same symptoms. Discover the true story of what a mother and father sacrificed for their children.
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 of liver 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.
Photography: Frances Juriansz
Now the parents' roles were reversed. A person is only able to donate his or her liver once, so this time Jason went through the tests to make sure he was a healthy, suitable match. They needed to move quickly. Lynn and Jason watched the tinge of yellow in Alyson's eyes transform into a full-body hue. The child stopped eating and had to be given a feeding tube. She needed blood transfusions. Her tiny, fluid-filled belly grew round and hard. It looked to Jason as if she had "swallowed a watermelon whole."
By late December, as they continued to make preparations for surgery, the doctors were blunt: Alyson was in bad shape. Without a successful transplant, she wouldn't live long. Their daughter was so young the Hampsons had only ever heard her laugh once. That sound had disappeared when she fell sick. Now they were told they might never hear it again.
December passed like a terrible dream. While Alyson and Lynn stayed in 6A, Logan and Jason moved into the nearby Ronald McDonald House, a place to stay for families receiving treatment for serious illnesses. Two days before Christmas, Jason caught the Norwalk virus, throwing the whole process off-track as doctors kept him quarantined, waiting for him to recover. If Jason was no longer a suitable match-if his health wasn't good enough or there was something wrong with his liver-the chances of finding another donor in time were extremely slim. He lay in bed, worrying every wasted day was putting his daughter one step closer to death.
By December 26, Jason had recovered from the virus enough to visit the hospital, where the entire family celebrated a belated Christmas together. Logan got a Wii video-game console-an artifact from what seemed like a different life, months earlier, when Lynn and Jason had had the luxury of carefully picking out Christmas presents for their son. The doctors delivered their own gift later that day: Jason was fine. The transplant could proceed, but Alyson was so close to death it needed to happen immediately. They had 48 hours.
The next night, four-year-old Logan stayed with Lynn and Alyson in 6A. Jason was alone, across the road at Toronto General. His mind was crowded with appalling possibilities. What if they opened him up and found a flaw in his liver? What if he woke up and his daughter didn't? What if something happened to him, and Lynn and the kids were left on their own? Though they didn't know it at the time, the family's two separate rooms were right across the road from one another. When Jason looked out the window during his long sleepless night, he was staring at the room where his family was staying, waiting for him.
By 7 a.m., surgery time, Jason was so nervous he couldn't answer basic questions. "I was a mess," says Jason. "I was on the verge of just breaking."
Photography: Frances Juriansz
Across the way, Alyson was waiting at SickKids, her little body covered in tubes. If everything went according to plan, surgeons would remove about 20 percent of Jason's liver. They would stitch him up and transport the organ beneath busy Gerrard Street West, through the underground tunnel that connects the two hospitals. Only then would they open up Alyson and begin the delicate operation.
"With a very small baby, the surgery is more complex," says SickKids' Yaron Avitzur. It's a meticulous procedure. "You need to connect bile ducts, blood vessels." Eventually, much of Jason's liver would regenerate. Inside Alyson, Jason's organ would-if everything proceeded as hoped-become a part of his daughter, growing with her through childhood, adulthood and all the way into old age. It was a kind of alchemy: You took one life and, with ingenuity, made two.
Jason remembers getting wheeled into the operating room and being transferred onto the table, stainless steel everywhere. Then the mask, followed by the countdown. Next, he remembers waking in recovery, one insistent thought slicing through the fog: Is she okay?
Two weeks later, on January 9, Alyson was allowed to leave the ICU and return to 6A. Since the surgery, there had been minor setbacks with her lungs, but things seemed under control. It was there, in the familiar ward, that Lynn finally heard it-the soft sound of her daughter's laugh. "It was the greatest thing I'd ever heard," Lynn says. When the Hampsons talk about it now, they call it the "second first time" Alyson ever laughed.
The doctors at SickKids have done a lot of transplants, but they've never had a family like the Hampsons-where both parents donated an organ to save a child.
"There are risks and challenges for the donors," says Avitzur. "It's not a straightforward decision. And the fact that both parents were willing to do that, without hesitation, to save their children's lives, is admirable. It's one of those things where you say, 'Wow.'"
Today, Alyson is crawling, catching up on the milestones she missed during her illness. Logan is wheeling around, somersaulting along the carpet, flashing a glimpse of his surgery scar, a clean slice of a line that swoops across his abdomen-the Hampson family crest.