MADISON, Wis. — Sean Eiles knows the simplest way to get his 16-month-old daughter Ellie to smile is to put her on a blanket in the yard of their Madison home and let her stare at the trees.
“The outdoors is her happy place,” he said. “I think she’s making up for lost time after spending so much of her early life in the hospital.”
Sean never imagined he’d spend so much time in the hospital either, let alone become a living liver donor — or even a parent — but because of Ellie, he did all this in less than 10 months.
Shortly after Sean married his husband, Steve, in 2019, they discussed the best way to build their family and decided on adoption. The approval process took a year and a half.
Finally, they received a call in November 2023 from a caseworker who said a birth mother had chosen the couple. The birth mother went into emergency labor just a few days later in Michigan.
Born five weeks early, Ellie required additional medical care and needed to gain weight before being discharged from the hospital.
“We never missed a shift,” Sean said. “We were staying at a house across the street from the hospital, and we just took turns staying with Ellie. There was something inside of us that said we just couldn’t step away.”
After Sean and Steve brought Ellie home, they thought they would be able to settle into their lives as new parents. But Ellie experienced a few health issues, including vomiting and yellowish eyes. At her four-month appointment in March 2024, her family practice nurse practitioner noted the infant’s yellowish eyes and consulted with a physician in the office, who conducted a physical exam and found Ellie’s liver was enlarged. The care team told the couple to take her to an emergency room right away.
That night, the family met Dr. Katryn Furuya, medical director of the pediatric liver transplant program at UW Health. Furuya suspected Ellie had biliary atresia, a serious liver disease in which a baby’s bile ducts are blocked and can’t transport bile from the liver to the small intestine.
“I reviewed her test results and assessed the condition of her liver which all indicated biliary atresia,” said Furuya, who is also a professor of pediatrics at the University of Wisconsin School of Medicine and Public Health. “Typically, doctors catch the disease within the first few weeks of a baby’s life, but in Ellie’s case, it was missed.”
In early April, Ellie underwent a procedure called a Kasai portoenterostomy, performed by Dr. Peter Nichol, pediatric surgeon, UW Health, and associate professor of surgery at the UW School of Medicine and Public Health. During this procedure, the surgeon removes the damaged bile ducts outside the liver and then uses a portion of the patient’s own small intestine to replace the damaged bile ducts, according to Nichol.
“This is usually the first treatment for biliary atresia, but it cannot cure the disease and most kids will eventually need a liver transplant, as was the case with Ellie,” he said.
The need for a liver transplant, and soon, was clear to Furuya, who approached the Eileses to discuss the liver transplantation evaluation process and the steps needed for her to join the deceased donor wait list.
“We signed documents to get Ellie listed for a donor liver, and one of those documents had to do with living liver donation,” Sean said. “We didn’t even know living donation was an option for a liver transplant.”
“So many times I wanted to switch places with her because she was so sick,” Steve said. “While the prospect of a transplant was scary, we knew she was in good hands with this team.”
Both Sean and Steve, as well as several of their family members, began the process of getting tested to be donors. Steve was ruled out right away because of his blood type, and Sean figured that because he is 6 feet tall, he would never be a good match. But he was.
On Aug. 15, 2024, both father and daughter underwent their surgeries. Dr. David Al-Adra, surgical director of the living liver donation program, UW Health, and assistant professor of surgery, UW School of Medicine and Public Health, led the team that removed a portion of Sean’s liver, and Dr. Kelly Collins, surgical director of the pediatric transplant program at the UW Health Transplant Center, and associate professor of surgery at the UW School of Medicine and Public Health, led the team that transplanted the organ into Ellie.
“We are a highly collaborative group dedicated to ensuring the best outcomes for these families and it was a pleasure working with the pediatric transplant team,” Al-Adra said. “The family was incredibly dedicated, always keeping their daughter’s health at the forefront. It was inspiring to see how they were willing to do everything possible to give her a healthy life.”
During the initial days following her surgery, Ellie remained in the Pediatric Intensive Care Unit at American Family Children’s Hospital, and Sean spent four days at University Hospital before being discharged home. This meant Steve had to spend his time shuttling back and forth between his loved ones.
“It was incredibly tough having my two favorite people in the hospital at the same time,” Steve said. “We are so grateful to the nurses, doctors, therapists and child life staff who tried to give Ellie as normal a childhood as possible while in the hospital.”
Ellie was able to go home at the start of September; however, a couple of weeks later, blood tests indicated acute rejection, which is most common in the first three months following a transplant, according to Furuya. One month following her transplant, she was readmitted to American Family Children’s Hospital for treatment, which included intravenous steroids and an adjustment to her immunosuppressant medications. Under the expert care of her team, Ellie’s body accepted the organ, and she was discharged again in early October.
Despite all the health challenges in her young life, Ellie is now thriving with her new liver. Her dads said it's been a delight to watch her hit milestones such as rolling over, eating solid foods and soaking up the sunshine in the yard.
Slowly, the Eileses are returning to a sense of normalcy and starting to enjoy life as a healthy family of three.
“You can tell Ellie is happy to be feeling well,” Sean said. “After all she’s been through, I’m amazed she’s able to put on a smile and be happy.”