Parents of a child with mysterious hepatitis share his symptoms

In the days leading up to Christmas, the Cincinnati Widders family was in vacation mode, focused on school holidays, buying gifts and planning a Florida vacation. In the turmoil of the season, other parents might have missed the signs that something was wrong with one of their children, but Elizabeth and Jack Widders were paying attention.

They noticed when the middle of their three children, Liviah, 4, threw up a few weeks before Christmas, and they saw her develop a small rash a few days later. They dismissed the nausea because she had eaten too many sweets at Grandma’s the night before, and they thought the rash might have come from a sweater dress she wore to a Christmas party at home. ‘school. 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 noticed a yellowing around Liviah’s eyes and “knew right away that something was wrong,” she said. Liviah had jaundice as a baby, and her mother remembered yellowing of the skin and eyes as a telltale sign. She knew how to ask if Liviah had been to the bathroom recently. “Yeah, and my pee was orange. Isn’t that weird?” she recalled her daughter responding.

Elizabeth immediately took her to the hospital. She was worried, but not too worried, because she thought the doctors would just treat Liviah’s jaundice the same way they had when she was a newborn. Instead, doctors told her they were concerned about Liviah’s blood work and that she should be admitted to Cincinnati Children’s Hospital.

A mysterious diagnosis

Doctors found Liviah’s liver was inflamed, a condition known as hepatitis, and throughout the day they thought she might be suffering from acute liver failure or an illness. end-stage liver disease.

That night, however, they had found what Jack Widders described as a “partial answer”. Liviah had tested positive for adenovirus, and doctors suspected it may have been linked to her failing liver.

Liviah Widders with her father in hospital.Courtesy of Cincinnati Children’s, Widders Family

Adenoviruses are common and usually only cause cold-like or gastrointestinal symptoms, such as sore throat, fever, stomach pain, or diarrhea. But in recent months, the virus has been detected in many children who have suffered liver damage similar to Liviah’s.

In April, the The Centers for Disease Control and Prevention has issued an alert on hepatitis of unknown origin in children, caused by a cluster of nine cases in Alabama last October. Hepatitis is often caused by one of the hepatitis viruses, but in the 180 US 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 liver transplants.

Worldwide, more than 600 cases of children have been reported, resulting in 14 deaths, according to the European Center for Disease Control and Prevention. The US CDC is investigating six deaths, NBC News reported.

RELATED: Mysterious Hepatitis Outbreak in Children: Which States Are Investigating Cases?

Dr Anna Peters, one of Liviah’s doctors and a pediatric transplant hepatologist at Cincinnati Children’s Hospital, said the possible link between adenovirus and severe pediatric hepatitis is “unusual” because the virus generally does not affect the liver of healthy children.

Liviah’s hepatitis may also be linked to COVID-19, as Peters said her blood tests showed COVID antibodies, although Liviah had not previously been tested for COVID-19.

“It’s very possible that COVID, the adenovirus, or both triggered an immune response that attacked his liver,” Peters told TODAY. “But it’s very difficult to prove (the) cause (retroactively).”

Liviah was too young to have been vaccinated against COVID-19, so doctors know the vaccination did not help hepatitis.

Regardless of the cause of Liviah’s liver failure, her blood tests revealed that she had damaged liver cells. Elizabeth Widders has been told the family should plan to stay in hospital until Christmas as doctors check her condition and monitor her care. The next morning, Elizabeth Widders said she had settled into “the seriousness” of Liviah’s condition.

“It was a sprint from there,” 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 as a mysterious case of pediatric hepatitis became every parent’s worst nightmare when the Widders’ vibrant and healthy daughter began to deteriorate before their eyes.

Peters explained that the liver “has a lot of work it does for the body,” including making important proteins, keeping blood sugar levels stable, eliminating toxins and helping to process medications. So if a person’s liver isn’t working properly, “it will affect brain activity and cognition, can make you sleepy, and most people won’t act like themselves.”

Jack and Elizabeth Widders witnessed all of the symptoms Peters mentioned in real time. At one point, “Liviah didn’t even know where she was,” her father recalled. “She was asking the same question over and over again for 10 minutes straight even though you had just answered it seconds before.” Her skin color had also become “all yellow” and she had a “distant look”, a sign that she was not mentally present. “It was very difficult to see her in this state,” Jack Widders told TODAY.

Despite doctors’ best efforts, Liviah’s condition worsened, prompting doctors to give her several rounds of liver dialysis, without which Liviah “wouldn’t have lasted much longer,” Jack Widders said. “It was the bridge to go from where his body was to be transplanted.”

Liviah and her parents.
Liviah and her parents.Courtesy of Cincinnati Children’s, Widders Family

Once Liviah started needing “a high level of liver care,” doctors gave her a “survival expectation of less than seven days,” Peters said. On December 28, the hospital placed her in the highest priority category of the organ transplant list. But Liviah’s parents knew there was no guarantee their daughter would get a new liver in time.

Elizabeth Widders said she “knew[Liviah]didn’t have a healthy week ahead of her anymore” and remembers “sobbing” and “praying” a lot. Liviah’s 6-year-old brother, Jackson, “her best friend in the world”, was particularly concerned. “He was staying with his family but wanted to know everything that was going on with them,” she said.

Jack Widders added: “Within 11 days she went from a normal, healthy little girl to a transplant recipient.”

An unforgettable moment

On December 30, two days after she was put 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 cycle (of liver dialysis),” recalls Elizabeth Widders. Doctors eased COVID restrictions so Liviah’s family could visit her two at a time in case she fell into a coma or worse.

Then, at 4:15 p.m. one afternoon, as Livah’s aunt, Jackson, and Livah’s parents were gathered around her bed, “saying a prayer for her,” the phone rang. His mother answered on loudspeaker. “It was the liver coordinator calling to tell us they had found a match,” Elizabeth Widders said. They passed the news on to the rest of the family in the waiting room, and “everyone was able to celebrate the happy news together,” she said. “There was a lot of joy, a lot of tears.”

Liviah Widders in the hospital.
Liviah Widders in the hospital.Courtesy of Cincinnati Children’s, Widders Family

On the morning of January 1, she was taken to surgery. “I won’t forget the moment they told us his new liver was in place and working,” recalls Jack Widders.

After the surgery, the Widders’ top priority was getting Liviah back to good health. “She had lost a lot of weight, and her biggest thing was trying to start eating again,” her father explained. They also had to find the right levels for her various medications, and she had to start drinking 56 fluid ounces. “She drinks more water a day than her dad,” Elizabeth Widders said with a laugh.

Five months later, “Liviah is doing extremely well. Looking at it, you would never know it happened,” said Jack Widders.

“She’s back on the pitch playing football, dancing again and being a 4-year-old girl again,” his wife added.

Liviah has an 8 inch long scar that reminds her of what she went through. “We call it her princess mark,” said Jack Widders.

What parents need to know

The number of reported cases of mysterious pediatric hepatitis has increased following the CDC alert, but it remains unclear whether there has indeed been an increase in cases of pediatric hepatitis of unknown cause over the years. previous ones. In an average year, up to 1,000 children are hospitalized with hepatitis of unknown cause, Dr. Jay Butler, the CDC’s deputy director for infectious diseases, said in a recent press briefing.

“All we can say for sure at this point is that we’re not seeing a dramatic increase in the number of cases” compared to what’s typical, Butler said.

Peters called what happened to Liviah “a very rare event” and stressed that “no one should panic”. She also recommended that 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 healthcare provider. “Outside of the neonatal period, jaundice is not normal in children or adults,” she explained.

For other parents, Elizabeth Widders stressed the “need to be your child’s best advocate” and follow your instincts if something is wrong. “Worst-case scenario, you’ll face something like us,” she said. “But it’s much more likely that everything is fine and your child just had a little blood test.”

Although Liviah is doing well today, for the rest of her life she will be at higher risk for other illnesses and will need daily doses of immunosuppressants and medications which can be “very expensive”, and frequent doctor visits, such as “Transplant patients need specialized medical care throughout their lives,” Peters said.

To help these patients pay for routine medical expenses, the Children’s Organ Transplant Association establishes a donation fund from which each transplant recipient can draw if necessary.

Alongside her parents, Liviah spoke with TODAY for a while and said she’s ‘doing fine’ and named ‘people who give me presents’ as the only bright spot during her hospital stay. . The happy 4-year-old has also given back to the hospital that saved her life and other children 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.

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