Eme and Jide Familoni thought their plan was simple: They would travel from their Lagos, Nigeria, home to Baltimore to visit Eme’s brother and sister-in-law while Eme was pregnant, have their twin girls in America, then return home with the babies and their toddler son, Kitan.

But shortly after the birth of Tofunmi and Tomisin, the Familonis noticed obvious differences between the girls. Tofunmi remained jaundiced for far longer than Tomisin, with yellowed eyes, and wasn’t gaining weight or hitting the same milestones as her sister. Their pediatrician chalked it up as within normal range for a twin.

Then one day while Eme was changing Tofunmi’s diaper, Eme’s sister-in-law, a pediatrician in Maryland, noticed the baby’s bowel movement was white. She insisted Eme take a cell phone picture of the soiled diaper and e-mail it to her during the day. Ten minutes after Eme sent the photo, her sister-in-law called: “You need to bring her to the hospital right away.” Tofunmi was just three months old.

“I thought the doctors would just give us some drugs,” recalls Eme, although testing revealed a much more serious, biliary atresia-like liver condition that would require a liver transplant. Eme was referred to Kathy Schwarz, pediatric transplant hepatologist at the Johns Hopkins Pediatric Liver Center, who believed Tofunmi’s condition to be a type of genetic liver disease. By then, the baby was so malnourished she needed around-the-clock formula feeding through a tube, as well as vitamin supplements. The transplant team explained the living donor transplant procedure to Jide via Skype, as he already had returned to Nigeria and his consulting business. He came back to Baltimore for testing as a potential liver donor and was found to be a match.

During Tofunmi’s first year of life she was always tired and only allowed her mother to hold her, says Eme. And she vomited so often that Eme would have to travel with a bowl and backup outfits for both of them whenever they went out. Meanwhile, to maintain her travel visa, Eme periodically had to return to Nigeria, finding times when her daughter was stable enough to make the journey.

Schwarz said Tofunmi could have the transplant, but the Familonis faced another hurdle when preoperative testing found Jide had an abnormal heart rhythm. But ten days later, once he was stable, the transplant occurred.

“It’s like we took a completely different person home from the hospital,” says Jide of Tofunmi, who has been gaining weight and doing well since the operation. “Now she’s laughing a lot and running around, and sometimes we can’t even find her in the house.”

Over nearly two decades, from 1992 to 2010, the Johns Hopkins pediatric living-related donor program has transplanted 52 children, and achieved one-, five- and ten-year patient and graft survival rates comparable with national figures. Five-year survival rates ranged from 82 percent from 1992-to-1995 to 100 percent from 2001-to-2003 (Pediatric Transplantation 2012;16:486-495).

“Our survival rates have continued to be very high thanks to the experience and devotion to excellence of the medical team,” says Schwarz.

Douglas Mogul, director of the pediatric liver transplant program, adds that Johns Hopkins Children’s Center benefits pediatric patients by being embedded within a larger academic medical center. “This gives us the breadth and depth of resources typically found only in adult programs, allowing for rapid evaluation of living donors and additional expertise in radiology, interventional radiology and pathology,” says Mogul.

 The pediatric liver transplant team also includes Wikrom Karnsakul, director of the pediatric liver center; surgeon Andrew Cameron, pediatric nurse practitioners Mary Kay Alford and Celicia Williams, as well as pediatric specialists in anesthesia, intensive care, pharmacy and nutrition.

For more information, see our Pediatric Liver Transplant Center.