Whether she’s tearing across the soccer field, sticking a near perfect landing in a gymnastics routine or training for an upcoming swim meet, Phoebe Root is always on the go. As her father, David, shuttles his active 12-year-old daughter to and from meets, games and competitions, he almost can’t believe it’s the same girl who, at 8 weeks old, was diagnosed with a potentially life-threatening liver disorder.
“Looking back at how sick she was, I never would have guessed our lives would end up feeling so… normal,” says David, as he drove his daughter to an afternoon swim practice. “When she was sick, we were so focused on the details of her illness that we couldn’t see the big picture. Now that we’re living in that picture, and it feels great.”
Shortly after her birth, Phoebe was diagnosed with biliary atresia, a rare disorder that prevents bile ducts in the liver from draining correctly, causing a potential fatal buildup of toxins in the body. The diagnosis led the Root family to Boston Children’s Hospital for treatment. Once there, Phoebe’s doctors made several attempts to treat her failing liver, but no matter what they tried, nothing seemed to fully alleviate her symptoms. After six months, it was clear that her best chance at survival would be a liver transplant. She was placed on the organ donation list, and David and his wife, Amy, prepared themselves for a difficult wait in their Maine home.
To Boston for a liver transplant
When they received the call that a liver had become available, David, Amy and Phoebe were rushed to Boston via a LifeFlight helicopter. “The call came in at 9 p.m., and we instantly activated our plan,” recalls Amy. “Fortunately, the LifeFlight helicopter was available. Without it, we may not have made it to Boston in time for the transplant that saved Phoebe’s life.”
Once in Boston, Phoebe’s medical team was waiting and rushed her to surgery where Phoebe’s surgeon, Pediatric Transplant Center director Dr. Heung Bae Kim was waiting. Hours later, Phoebe was resting quietly with a new, healthy liver. In the coming months, Phoebe’s medical team continued to care for her—she faced a few complications involving fluid buildup in the liver—but she gradually got better and required less and less monitoring.
Now, almost 12 years since her transplant surgery, Phoebe only sees the team from the Pediatric Transplant Center once a year, coming into Boston from Maine for her annual checkup. “When Phoebe was a baby, Amy and I thought she’d be in and out of the hospital forever,” David says. “Now I hardly ever even think about her condition. It’s amazing.”
Like her mother and father, Phoebe doesn’t think too much about her transplant either. Aside from following her daily medication regimen, she says her life is exactly the same as all her friends, many of whom don’t even know about her transplant. “I told some of my really, really close friends about the transplant I got when was a baby, but that’s it,” she says. “I don’t really think about it, so why should anyone else?”
It’s a sentiment her father agrees with.
“It’s amazing that what once was such a big part of our lives is now something of an afterthought,” he says. “We’re very thankful for the team at Boston Children’s for getting us to this point.”
Phoebe is headed to Camp Bishopswood this summer for the third year in a row. In the fall she will run on the cross-country team and then spend the winter on the Penobscot Bay YMCA Sailfish Swim Team.
Learn more about the Boston Children’s Liver Transplant Program.