Childhood Hepatitis: A Patient’s Perspective

When Kelsea Schwab’s then 2-year-old daughter Baelyn became ill in April 2022, Kelsea attributed her runny nose and hives to an allergic reaction and scheduled a routine visit to their primary care physician. It was the next day as Baelyn’s symptoms worsened that Kelsea began to suspect something else was wrong. “I noticed that her eyes were more yellow than usual. I thought it could be due to the allergy medication, but they kept getting worse.”

That weekend, another family member pointed out how strange Baelyn’s eyes looked. Her suspicions confirmed, Kelsea brought her daughter into the doctor the following Tuesday. She was shocked when the doctor called after performing blood tests and diagnosed Baelyn with acute hepatitis and possible liver failure. Their physician referred the family to M Health Masonic Children’s Hospital in Minneapolis for treatment and told them to get there as soon as possible. Baelyn was airlifted to Minnesota later that day.

Prepping for Transplant

Once the family arrived at the hospital, a multidisciplinary team that ran tests on Baelyn found her liver failure was severe. Baelyn’s care team –— and family — held out hope that her liver would recover on its own without the need for transplant. Srinath Chinnakotla, MD, MCh, FACS, MBA, surgical director of liver transplantation and professor of surgery at University of Minnesota Medical School, was assigned to Baelyn’s case and visited her daily to monitor the ammonia levels in her liver to see if they stabilized on their own. “When her ammonia levels started climbing, that’s when I got nervous,” Dr. Chinnakotla said. Not wanting to wait any longer, the medical team placed Baelyn on the transplant waiting list on April 29, less than a week after Kelsea first noticed that Baelyn’s eyes had turned yellow.

In preparation for transplant, Baelyn was put on an antiviral medication to treat her for adenovirus. Adenovirus is a common illness that presents in the majority of hepatitis patients, and typically only causes cold or flu-like symptoms. Since Baelyn’s doctors found the virus was active in her bloodstream, and because transplant severely weakens a person’s immune system, it was important to prevent the virus from spreading after transplant and attacking her healthy new liver.

The Road to Recovery

Baelyn was fortunate that her time on the waiting list was short. A matching donor liver became available quickly and she underwent transplant surgery on May 5, just over a week after being admitted to the hospital. Dr. Chinnakotla performed the operation, his second pediatric transplant for liver failure that year. “The number of pediatric transplants done for acute liver failure [is] typically a few every year,” he noted. “This year, we’ve already seen two children with liver failure and transplanted two children with liver failure. This is very unusual for us.”

Baelyn also had an unusual anatomy: She had two small vessels supplying blood to her liver instead of one larger one. Dr. Chinnakotla used blood vessels from the same liver donor to create a unique bridge graft, known as an aortohepatic conduit. Despite the challenges, the surgery was successful, and Kelsea noticed an almost immediate difference in her daughter. Before transplant, Baelyn’s skin had turned a dark yellow — almost orange — color. By the time she woke up, it had returned to normal. A short time later, Kelsea recalls, Baelyn’s fiery personality returned as well, and she began to play, walk and become her normal, rambunctious self.

“Baelyn has been such a trooper through everything. She has always had such a positive attitude and doesn’t struggle at all with the many appointments, pokes or anything of [the like],” says Kelsea. “Pretransplant, I was working full time and was the primary earner in the home. Since transplant, I have had to take a step back from work, and my full-time job is taking care of Baelyn and advocating for her. It hasn’t always been easy, but [we connect] with other pediatric transplant families and [utilize] the hospital’s resources such as biweekly caregiver calls. We all stick together and are bonded through the medical life.”

Baelyn’s story, though unusual, was one of nearly 200 hepatitis outbreaks that affected children in 36 states between November 2021 and May 2022.¹ Public health experts are still researching the causes, but for the Schwab family, it’s a health scare they are thankful to finally put behind them. Since the operation, Baelyn has gotten a gastrostomy tube and continues to receive full nutrition through that because of a recent diagnosis of gastroparesis. She also receives speech, occupational and physical therapy multiple times per week, and is excited to start preschool this fall.