KINGSTON — Thoughts of toys dance around most little girl’s heads during the holiday season, but for 8-year-old Haley Jacob, a new liver was on her list to Santa.
In 2014, Haley was diagnosed with autoimmune hepatitis, a disease that caused her body to attack its own liver. Haley’s parents Glen and Lisa administered medications to manage the disease until summer 2015, when a cold-like virus caused a level of fatigue and weight loss so pronounced that her doctor recommended a liver transplant. After Lisa told Amanda Rakowski, her coworker at Geisinger, that Glen was a blood match but unable to donate due to the size of his liver, Amanda decided to undergo tests and determine if she was compatible. Amanda said she felt compelled to help because of a life-saving heart transplant received by her mother.
“My mom had a great influence on me and I also work in the operating room, I’ve seen liver surgery before and I knew that it wouldn’t be as bad as people would anticipate it to be,” Amanda said. “I decided that she deserves to live the life the rest of us live.”
After confirming the compatibility between Haley and Amanda’s anatomies, the two underwent surgery Oct. 18 in Philadelphia. Haley’s liver was removed completely and replaced with one-third of Amanda’s — Amanda’s body will regenerate the donated piece while Haley’s body will make the new organ into an appropriately sized liver as she grows older.
Haley had mixed emotions going into the operating room.
“I was nervous and excited,” Haley said.
Lisa said the surgery represented a second chance for her daughter.
“She has a new life and a new liver,” Lisa said.
Haley’s damaged liver made it difficult to process food, so she received supplemental nutrients at night time via a feeding tube, as well as a number of medications. Glen said the family tried to keep Haley’s life as normal as possible during her ordeal.
“We didn’t want her to be a patient all her life, so we tried to keep things normal,” Glen said. “We did normal things, went on vacation, that kind of stuff.”
Glen and Lisa also kept Haley’s daily routines as normal as possible. She still went to school everyday, but due to fatigue caused by her condition, Haley would often nap for short periods during her days at Wyoming Valley Montessori School in Kingston.
Kara Taylor, Haley’s third-year teacher at the institution, turned Haley’s situation into a teachable moment for other students. The class had a “surgery send-off day,” during which they learned about Haley’s condition and made foam livers to take home. They also learned about consoling and empathy — Taylor’s class sent funny photos to Haley while she recovered from her procedure and spoke with her via video chat platform Skype.
On Dec. 12, that lesson came full-circle when Haley, her parents and Amanda spoke to the students. Haley recounted the time before and after her surgery and her mother thanked the school community for their support.
“We tried to keep her illness as a secondary thing and school really helped out in that regard,” Lisa said. “Even if she wasn’t feeling great that day we would push her to get to school and, if she needs to, have a nap. Most other schools wouldn’t do that — accommodate. We know they would so she really could participate as much as possible.”
Taylor said Haley has been a new person since she began slowly integrating back into the student body in late November.
“The light is back in her eyes,” said Taylor. “She is working the whole day, she hasn’t been able to complete a full day of work since probably her first-grade year. Her energy level is there, she’s eating — it was an instant change. It was really amazing.”
Glen said it wasn’t that way at first. He said Haley wasn’t herself after the surgery, but after her body got used to the new addition, things started to change for the better.
“She had less energy, she was sore, aching, and her body was changing, but really the last three weeks she’s been like a new person,” Glen said. “Her energy level has really increased and she’s just so much more active and energetic. It’s just amazing to see.”
Haley’s newfound energy has opened up a new world of activities.
“I like to run around and bounce a ball,” Haley said. “Also crafts.”
Glen said the next step, within bounds, is up to his daughter. For the 8-year-old with a new liver, those bounds look a lot like the boards around an ice rink.
“I want to try ice skating,” Haley said.