For years, Victoria and Andrew Humphreys of Coraki, Australia, sought answers, a proper diagnosis and care for their daughter Paige. Their quest led them around the world to Lurie Children’s.
At four years old, Paige, now 10, was diagnosed with portal hypertension. The vein that delivered blood from her intestines to her liver suffered from high blood pressure, resulting in internal bleeding and pending liver failure as well as other symptoms that could not be explained by her diagnosis. “It just wasn’t adding up,” Paige’s mother, Victoria, said.
Desperate for answers, Victoria and Paige’s father Andrew sought out physicians around Australia and conducted their own online research. They began searching for surgeons around the world who had the expertise needed to perform a life-saving surgery on their daughter. It wasn’t until their quest for answers led them to Lurie Children’s that they began to feel hopeful.
Through an internet search, Paige’s parents found Dr. Riccardo Superina, the Head of the Transplant Surgery at Lurie Children’s. They connected via email and shared details of Paige’s journey. Instantly, Dr. Superina provided answers to questions the Humphreys posed about their daughter’s condition. With the newfound information in tow, the parents decided that Lurie Children’s was the best place for their daughter to get the care she needed. The surgery, known as the meso-Rex operation, would bypass the blocked portal vein and restore venous blood flow to Paige’s liver. They found that Dr. Superina was the only surgeon in the world willing to take her on.
Paige’s family had the will to get to Lurie Children’s—they just needed a way. The Humphreys started a GoFundMe campaign and received significant support from the Lions Club International to raise funds for their daughter’s life-saving surgery, plus travel and lodging expenses. In an effort to help raise funds for the trip, Dr. Superina even appeared in a video explaining Paige’s rare condition and why her life depended on the operation she would undergo in Chicago. In August, the Hupmhreys traveled nearly 9,000 miles to Chicago to prepare for Paige’s surgery in October, bringing along Paige’s siblings Melody, 8, Leyland, 6, and Abel, 2.
Once in Chicago, Joan Lokar, APN, Advanced Practice Nurse for Transplant at Lurie Children’s, took time to speak with Paige’s parents and form a solid relationship with the Humphreys. “In the first 10 minutes, she gave us more answers than we’d had in 10 years,” Andrew said. Once Paige was at Lurie Children’s, she was diagnosed with portopulmonary syndrome. An echocardiogram showed that the liver disorder had affected the blood pressure in her lungs, making the operation and the subsequent recovery more hazardous.
Even with reassurance from others, sending Paige into the operating room caused her parents more turmoil than they had ever experienced, Andrew said. Within just 60 minutes of the surgery start, however, they received the best news of their lives: their daughter would be able to undergo the operation successfully and begin the long road to recovery.
After the successful surgery, Paige recovered in Lurie Children’s Lefkofsky Family Pediatric Intensive Care Unit (PICU). “The amount of care that went into her recovery was mind-boggling,” Andrew said, referring to the round-the-clock care Paige received from PICU physicians, nurses, therapists, child life specialists and more. “Everyone went to every length to make sure she got everything she needed.”
“Directly after the surgery, Dr. Superina said, ‘I didn’t really believe you’d ever make it here,’” Paige’s father recalled with tears in his eyes. “That was a sign of how generous this man was: He didn’t even expect that we’d ever get here, but he still did his best to help out.”
“Dr. Superina saved her life by giving us hope,” he said.
Three weeks into her recovery process, Paige said she felt better than ever before. Until early next year, she will continue recovering as an outpatient at Lurie Children’s under the supervision of Dr. Superina and the rest of the transplant team, with her family by her side.
Learn more about the Pediatric Portal Hypertension Program at Lurie Children’s.