For most first-time parents, the initial few weeks of caring for a new baby can be nerve-wracking. But, the first month of parenting for Kevin and Maureen Sturtevant was nothing short of terrifying.
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."
Sam spent the next few days receiving medication and treatment to sustain him in the absence of a functioning liver. Doctors were hopeful that with enough support Sam's liver would begin to work again on it's own, avoiding the need for surgery. Unfortunately, within a week, Sam's condition failed to improve so members of Boston Children's Pediatric Transplant Center, who had been following Sam's case since his arrival, quickly placed him on the national organ donor waiting list.
Time passed, but due to Sam's small size and lack of available donor organs compatible with his blood type, a proper match couldn't be found. Time was running out for Sam so the team expanded the types of livers they would accept for him to include ABO incompatible. (An ABO incompatible transplant allows an organ from any donor—even those with an incompatible blood type—to be transplanted in a patient through a special process where the recipient's blood is "neutralized" to make it more compatible with the donated organ.) Because ABO incompatible liver transplants carry a unique set of risks, they are only done in severe situations—a category that clearly described Sam’s situation.
"ABO incompatible liver transplants definitely present some additional challenges, which is why we only use them as a last resort. But that's where we found ourselves with Sam," Elisofon says. "Fortunately, infants have an immature immune system in comparison to older children or adults, and it would be less likely for him to reject an incompatible organ. All things considered, the benefits far outweighed the risks for him."
Within 48 hours, a suitable ABO incompatible liver became available for Sam. But because he was so small, the entire liver wouldn't fit inside him. In response, his surgical team, under the lead of Khashayar Vakili, MD, used a special technique where the donor liver is carefully split in two unequally sized parts, creating a fully functional section of liver that was still small enough to fit inside Sam's eight-pound body.
Performing a transplant that is both ABO incompatible and a split liver procedure is rare. Doing so in a patient as young as Sam is even more uncommon. But because of the level of care Sam received both before and during surgery, his operation was a full success.
"Doing a liver transplant in a newborn will always come with specific sizing and vascular complications. Using an ABO incompatible donor organ just adds another dimension of risk," Vakili says. "But Sam is a fighter and Dr. Elisofon helped get him to a point where he was strong enough to undergo the operation. After the liver was segmented we were pleased to see how well it fit inside him. And once the transplant was complete it was great to see that his immune system produced very few antibodies against it. Everything went as smoothly as we could have asked for."
Within 14 days of his transplant, Sam, Kevin and Maureen were discharged from Boston Children's. And while he experienced a few minor setbacks shortly after leaving, Sam quickly got better on is own, requiring a little monitoring but no additional treatments.
"As a liver transplant recipient, Sam will always need specialized care, but knowing that he will have access to Dr. Vakili, Dr. Elisofon and the other extraordinary members of the Pediatric Transplant team is an enormous relief for Maureen and I," Kevin says. "Sam has proven that he's willing to do his part, and they have more than done theirs. In a very real sense, we consider them family."
As a thank-you to Sam's care team, Kevin is actively training as a member of Boston Children's Miracles for Miles team, where runners compete in the Boston Marathon while fundraising for the hospital. If you'd like to donate to Team Sam, please visit Kevin's page.
Visit the websites of the Center for Childhood Liver Disease or Pediatric Transplant Center to learn more about the care they provide, or to speak with one of our experts.