In the days leading up to Christmas, the Widders family of Cincinnati were in full holiday mode, focused on school parties, buying gifts and prepping for a vacation to Florida. In the hustle and bustle of the season, other parents might’ve missed the signs that something was amiss in one of their children, but Elizabeth and Jack Widders were paying attention.
They noticed when the middle of their three children, 4-year-old Liviah, threw up a couple of weeks before Christmas, and they saw her develop a small rash a few days later. They dismissed the nausea because she’d eaten too many sweets at Grandma’s the day before, and they thought the rash may’ve been from a sweater dress she wore at a school Christmas party. But one thing that stood out was how Liviah suddenly seemed “more tired than usual,” Elizabeth Widders told TODAY.
Then, just three days before Christmas, her mother observed yellowing around Liviah’s eyes and “knew right away something was wrong,” she said. Liviah had jaundice as a baby, and her mother remembered that yellowing skin and eyes are telltale signs. She knew to ask if Liviah had gone to the bathroom recently. “Yeah, and my pee was orange. Isn’t that weird?” she recalled her daughter replying.
Elizabeth took her to the hospital right away. She was concerned but not overly so, as she believed the doctors would simply treat Liviah’s jaundice the same way they had when she was a newborn. Instead, the doctors told her they were concerned about Liviah’s bloodwork and that she’d need to be admitted to Cincinnati Children’s Hospital.
A mysterious diagnosis
Doctors discovered an inflammation in Liviah’s liver, a condition known as hepatitis, and throughout the day thought she was possibly suffering from acute liver failure or end-stage liver disease.
By that night, however, they’d come up with what Jack Widders described as a “partial answer.” Liviah had tested positive for adenovirus, and doctors suspected it may’ve been connected to her failing liver.
Adenoviruses are common and usually only cause cold-like or gastrointestinal symptoms, such as sore throat, fever, stomach pain or diarrhea. But over the past several months, the virus has been detected in many children who’ve suffered liver damage similar to Liviah’s.
In April, the Centers for Disease Control and Prevention issued an alert about hepatitis of unknown origin in children, prompted by a cluster of nine cases in Alabama this past October. Hepatitis is often caused by one of the hepatitis viruses, but in the 180 U.S. cases under investigation as of mid-May, the usual causes have been ruled out. Half of these children tested positive for adenovirus, NBC News reported. Fifteen of the children required a liver transplant.
Around the world, more than 600 children cases have been reported, resulting in 14 deaths, according to the European Centre for Disease Control and Prevention. The U.S. CDC is investigating six deaths, NBC News reported.
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Dr. Anna Peters, one of Liviah’s doctors and a pediatric transplant hepatologist at Cincinnati Children’s Hospital, said the possible connection between adenovirus and severe pediatric hepatitis is “unusual,” as the virus doesn’t typically affect the liver of healthy children.
Liviah’s hepatitis may also be connected to COVID-19, as Peters said her bloodwork presented with COVID antibodies, though Liviah had not been tested for COVID-19 previously.
“It’s very possible that COVID, the adenovirus or both triggered an immune response that attacked her liver,” Peters told TODAY. “But it’s very difficult to prove (the) cause (retroactively).”
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Liviah was too young to have been vaccinated against COVID-19, so doctors know vaccination didn’t contribute to the hepatitis.
Regardless of what caused Liviah’s liver failure, her blood tests revealed she had damaged liver cells. Elizabeth Widders was told the family should plan on being in the hospital through Christmas, as doctors ascertained her condition and monitored her care. By the next morning, Elizabeth Widders said it had settled in “how severe” Liviah’s condition really was.
“It was a sprint from that point forward,” Jack Widders told TODAY. “The speed at which everything was happening was the crazy part. It was a roller coaster of ups and downs.”
The race for a new liver
What started out as a mysterious case of pediatric hepatitis became every parent’s worst nightmare as the Widders’ vibrant, healthy girl began deteriorating before their eyes.
Peters explained that the liver “has a lot of jobs that it does for the body,” including making important proteins, keeping blood-sugar levels stable, clearing out toxins and helping process medications. So, if a person’s liver isn’t working properly, “it will affect brain activity and cognition, can make one sleepy, and most people won’t be acting like themselves.”
Jack and Elizabeth Widders witnessed every symptom Peters mentioned in real time. At one point, “Liviah didn’t even know where she was,” her father recalled. “She’d ask the same question over and over again for 10 minutes straight even though you had just answered it a few seconds before.” Her skin color had also become “full-on yellow,” and she had a “far-off stare,” a sign that she wasn’t mentally present. “It was very difficult to see her in that state,” Jack Widders told TODAY.
Despite doctors’ efforts, Liviah’s condition worsened, prompting doctors to give her multiple rounds of liver dialysis, without which Liviah “wouldn’t have lasted much longer,” Jack Widders said. “It was the bridge to get from where her body was to transplant.”
Once Liviah began to need “a high level of liver care,” doctors gave her an “expected survival of less than seven days,” Peters said. On Dec. 28, the hospital placed her in the highest-priority category of the organ transplant list. But Liviah’s parents knew that it was no guarantee their daughter would get a new liver in time.
Elizabeth Widders said she “knew (Liviah) didn’t have a healthy week left in her,” and remembers “sobbing” and “praying” a lot. Liviah’s 6-year-old brother, Jaxson, “her best friend in the world,” was especially concerned. “He was staying with family but wanted to know everything that was happening with her,” she said.
Jack Widders added, “In the span of 11 days, she went from a normal, healthy little girl to a transplant recipient.”
An unforgettable moment
By Dec. 30, two days after being placed on the organ transplant list, Liviah’s family was preparing for the worst.
“We were told that she might not wake up from her next round (of liver dialysis),” Elizabeth Widders recalled. Doctors lessened the COVID restrictions so Liviah’s family could visit her two at a time in case she went into a coma or worse.
Then, at 4:15 one afternoon, while Livah’s aunt, Jaxson and Liviah’s parents were gathered around her bed, “saying a prayer over her,” the phone rang. Her mom answered on speakerphone. “It was the liver coordinator calling to tell us they found a match,” Elizabeth Widders gushed. They relayed the news to rest of the family in the waiting room, and “everyone got to celebrate the happy news together,” she said. “There was lots of joy, a lot of tears.”
On the morning of Jan. 1, she was taken into surgery. “I won’t forget the moment they told us her new liver was in and working,” Jack Widders recalled.
Post-surgery, the Widders’ top priority became getting Liviah healthy again. “She had lost a lot of weight, and her biggest thing was trying to get back onto eating food,” her father explained. They also had to find the right levels for her various medications, and she had to start drinking 56 ounces of liquid a day. “She drinks more water a day than her dad does,” Elizabeth Widders laughed.
Five months later, “Liviah is doing extremely well. Looking at her, you’d never know this happened,” Jack Widders said.
“She’s back out on the field playing soccer, is dancing again, and is back to being a 4-year-old little girl again,” his wife added.
Liviah has an 8-inch-long scar that serves as a reminder of what she endured. “We call it her princess mark,” Jack Widders said.
What parents should know
The number of reported cases of mystery pediatric hepatitis has grown following the CDC’s alert, but it’s still unclear if there has actually been an increase in cases of pediatric hepatitis with an unknown cause compared to previous years. In an average year, up to 1,000 children are hospitalized with hepatitis with an unknown cause, Dr. Jay Butler, the CDC’s deputy director for infectious diseases, said in a recent media briefing.
“All we can say for sure at this point in time is we’re not seeing a dramatic increase in the number of cases” versus what’s typical, Butler said.
Peters called what happened to Liviah “a very rare occurrence” and emphasized that “no one should panic.” She also recommended parents be on the lookout for signs of jaundice, such as yellow skin or eyes, pale stools and dark urine, and always report them to a health care provider. “Outside of the newborn period, jaundice is not normal in children or adults,” she explained.
For fellow parents, Elizabeth Widders stressed the “need to be your child’s best advocate,” and to follow your instincts if something feels amiss. “Worse case scenario, you’ll face something like we faced,” she said. “But it’s much more likely that nothing will be wrong and your child will have just had a little blood drawn.”
Although Liviah is doing well today, for the rest of her life, she’ll be at a higher risk of contracting other illnesses and will need daily doses of immunosuppressants and medication that can be “very expensive,” and frequent doctors’ visits, as “transplant patients need lifelong specialized medical care,” Peters said.
To help such patients with the ongoing medical expenses, the Children’s Organ Transplant Association establishes a donation fund for each transplant recipient to draw from when needed.
Alongside her parents, Liviah spoke with TODAY for a moment and said she is “doing good,” and named “people giving me gifts” as the one bright spot of her time in the hospital. The happy 4-year-old has also given back to the hospital that saved her life and to other kids with medical needs. “After she got home, she made and sold little earrings and trinkets and donated the proceeds to Cincinnati Children’s Hospital,” Elizabeth Widders said.