Laurie Lukianov has a more extensive medical history than most people would accumulate in several lifetimes. She spent most of her childhood in a hospital, and remarkably, that’s where the 26-year-old nursing student wants to spend her career.
“There is no question in my mind,” she says. “Since I was 3 years old, I wanted to be a nurse.”
Born with biliary atresia—a life-threatening liver condition in which the bile duct to the small intestine becomes blocked—Laurie underwent two liver transplants by age 13. Due to her long history of health problems, Laurie has had to overcome more obstacles than the average nursing student. But in many ways, these obstacles make her an ideal fit for the field she wishes to pursue—pediatric transplant.
‘The biggest benefit is that I know what they have gone through,” she says.
Days after coming home from the hospital, their son Sam refused to eat and felt cold to the touch. Worried, the Sturtevants took Sam to their local hospital where he was quickly admitted. In the coming days, Sam was diagnosed as having an enterovirus that was affecting all his organs, especially his liver, which was beginning to fail.
Sam’s condition continued to worsen. It soon became clear he needed higher subspecialty liver care than what was available in his local hospital, so his care team arranged for the family to be transferred to Boston Children’s Hospital’s Center for Childhood Liver Disease.
Moments after they arrived in Boston, the Sturtevants met a whole team of people who would be taking over Sam’s care, including Center for Childhood Liver Disease Associate Director Scott Elisofon, MD. “We met everyone, from neonatologists to nephrologists. It was a lot to take in at first, but Dr. Elisofon acted as our point person, which made things less overwhelming,” Kevin says. “And even though we spoke mostly with him, we always knew there was an entire team of people supporting Sam and us. It made a difficult time a little easier.” …
Every year, dozens of infants and small children in need of a liver transplant die waiting for a donor organ to become available. But it’s not usually a lack of donor organs (grafts) that prevents doctors from saving these children—it’s a lack of organs small enough to fit in their bodies.
“Infants and young children waiting for a new liver are at the greatest risk of dying on the organ waiting list, mainly due to a shortage of appropriately sized organs for them,” says Heung Bae Kim, MD, director of Boston Children’s Hospital’s Pediatric Transplant Center. “It’s a troubling statistic, but there are things that can be done to change that.”
The change Kim is referring to would alter current donor organ allocation policies to make more livers available for a special surgical technique called split liver transplantation. Split liver transplantation occurs when a donated adult liver is carefully segmented into two unequally sized portions—the larger segment is given to an adult patient and the smaller portion to a child—saving two people from a single organ. …
Every year dozens of infants and young children in need of a liver transplant die on the organ donation wait list because a donor organ small enough for their body didn’t become available in time. But there is hope—a surgical technique that lets surgeons split donor livers into two unequally sized segments, a small one for infants and a larger one for older patients. If the process were adopted more widely it could save many of these children, just as it saved Reagan.
An uncertain beginning
When Reagan Devlin was born in 2004, her parents Teresa and Bryan were overjoyed. But that joy quickly turned to concern when nurses noticed her dark complexion and irregular heartbeat. The family was transferred to a nearby pediatric hospital in their home state of Florida, where the skin around Reagan’s lower abdomen started to turn greenish in color, leading doctors to believe she had a rare liver disorder called patent ductus venosus. Because the condition is seen so rarely only a few medical centers have any experience in treating it, but doctors from Boston Children’s Hospital’s Vascular Anomalies Center are considered world experts in these types of diseases. Within 48 hours, the Devlins were boarding a flight to Boston.
But just a few hours after meeting their new care team at Boston Children’s, the Devlins received yet another shock: the disease Reagan had traveled hundreds of miles to receive care for wasn’t to blame for her failing health. After closely reviewing her case and speaking with colleagues, Maureen Jonas, MD, director of Boston Children’s Center for Childhood Liver Disease, determined that Reagan actually suffered from neonatal hemochromatosis—a liver condition even more rare than her original diagnosis. Unfortunately, this only increased the urgency of her case. The family was quickly introduced to Heung Bae Kim, MD, director of Boston Children’s Pediatric Transplant Center, to discuss next steps.
“After talking with Dr. Jonas and looking over her charts, Dr. Kim said he didn’t think Reagan would live more than 48 hours without a liver transplant,” Teresa remembers. “Everything was happening so fast it was hard to process, like a bad dream.” …