Three days before Christmas, Elizabeth Widders was stranded in her bathroom upstairs, tying red and green ribbons to the hair of her 4-year-old daughter, Liviah. But while Liviah was in the morning light, her mother noticed that the whites of her eyes had turned yellow.
She took Liviah downstairs to ask her husband, Jack, for a second opinion. He also saw the yellow tone.
Liviah and her two siblings had baby jaundice, and their parents, from Mason, Ohio, were familiar with the telltale signs. “I knew it: these are liver things,” Ms. Widders recalled.
Liviah was taken to the emergency room, where she was diagnosed with acute hepatitis, an inflammation of the liver. Less than two weeks later, doctors removed his defective liver and replaced it with a new one.
Over the past eight months, hundreds of other families have been trapped in similar whirlpools as their healthy children, on the other hand, developed hepatitis, seemingly unexpectedly. Six hundred and fifty probable cases have been reported in 33 countries, according to the World Health Organization. At least 38 children have required liver transplants and nine have died.
The cases have puzzled experts, who are investigating several potential causes. One main hypothesis is that an adenovirus, a family of common viruses that often cause flu-like or cold-like symptoms, may be responsible, but many questions remain.
The revelation that Liviah’s case could be part of a larger phenomenon has encouraged her parents, who have begun to share their story in hopes of educating others about key warning signs.
Cases are extremely rare, experts point out, and most do not even require transplants. “The odds of something like this happening are extremely small,” said Jack Widders, Liviah’s father.
But without a solid explanation, it feels like lightning that could hit any family.
“Where did he get the hepatitis?”
The first signs of trouble came on December 11, when Liviah began vomiting. At first, his parents attributed it to over-indulgence; Liviah had spent the night before with her grandmother, who is known to have spoiled children with sweets. “We called it ‘Grandma’s Hangover,'” Ms. Widders recalled.
Liviah, a lively, athletic girl, recovered quickly, but the next day, her 6-year-old brother, Jaxson, also fell ill. He had a high fever and was ill for days. Liviah, who returned to school, visited a trampoline park and decorated cookies with the neighbors, seemed to have dodged the worst.
Until, a week and a half later, his mother noticed his eyes. Her urine was also orange, Liviah revealed.
Understanding hepatitis
Hepatitis, an inflammation of the liver usually caused by a virus, involves a number of complicated factors, side effects, and stigma.
The diagnosis of hepatitis was a shock. The disease has a wide variety of potential causes, such as exposure to toxins, excessive alcohol consumption, and hepatitis B and C viruses, which are often associated with intravenous drug use. Mrs. Widders looked at her husband in disbelief, “Where did he get the hepatitis?”
(Hepatitis can also be caused by other viruses, though Ms. Widders didn’t know it at the time.)
That night, Liviah was admitted to Cincinnati Children’s Hospital Medical Center. “He went into acute liver failure,” said Dr. Anna Peters, a pediatric transplant hepatologist who was part of Liviah’s medical team. “It was pretty low.”
Over the next few days, Liviah’s condition deteriorated.
One of the main functions of the liver is to process toxic substances, including ammonia, which is produced naturally in the body; when the organ is not functioning properly, these toxins can travel to the brain, causing cognitive and behavioral changes. As Liviah’s ammonia levels rose, she became irritable and furious, shouting at her mother without provocation.
Damage to your liver, which produces proteins that help your blood clot, also slowed your natural clotting response, leaving you at high risk for bleeding problems.
Doctors gave Liviah steroids to reduce inflammation and a compound called lactulose to help remove ammonia. He had blood transfusions, a CT scan, an ultrasound and a liver biopsy. Mr. and Mrs. Widders slept in the hospital, while relatives cared for Jaxson and his one-year-old daughter.
Liviah spent part of Christmas Day sedated, but woke up long enough to open some presents, including the Hungry Hungry Hippos game. “She doesn’t remember Christmas much, but she does know that Santa Claus came,” said Mr. Widders.
At the top of the list
Despite treatment, Liviah’s clotting problems persisted and her ammonia levels remained high. She woke up agitated and confused. He asked the same questions: could I go for a walk? Where was his brother? – One time and another. He could barely beat a Candyland game with his grandmother, who had a broken heart. “Seeing it the way we see it, only it deteriorates rapidly before our eyes, is like, ‘How much longer do we have?’ His mother recalled.
On December 28, doctors broke the news: Liviah had been placed on the transplant list. State 1A: the highest priority.
Doctors decided to start Liviah with liver dialysis to remove some of the toxins from her blood while waiting for a match. The call came a few days later, while Liviah’s aunt was visiting. Mrs. Widders spoke to the transplant coordinator: they had a liver for Liviah.
It was a difficult time for Liviah’s parents, their joy tempered with grief over the family of the deceased donor.
“We were looking death in the face,” Ms. Widders said.
“That’s it,” her husband said. “And so we learned that our joy came at the expense of …”
“From another person’s disinterested ‘Yes’,” he continued. “Another person’s tragedy was our miracle.”
On January 1, Liviah received her new liver. The next day, the doctors got her out of bed, working to regain her strength.
On January 12, Liviah was discharged from the hospital. The Widders family celebrated Christmas again when they returned home, and the neighbors kept the decorations for Liviah. “There was a night when everyone got up,” Mrs. Widders said, “and we were able to drive and see the lights.”
Looking for a cause
From the beginning, the doctors had warned Liviah’s parents that they might never know why her liver had failed; in many cases of pediatric hepatitis, doctors never find a cause, Dr. Peters said.
In Liviah’s case, doctors ruled out a variety of common triggers, but blood tests found a possible culprit: an adenovirus.
Although there was no sign of the virus in the liver, an adenovirus infection could have “triggered an abnormal immune response that later attacked the liver,” Dr. Peters said.
It was not a completely satisfactory explanation, he admitted. Adenoviruses do not usually cause liver damage in healthy children and Liviah adenovirus levels were low.
The mystery did not confuse Liviah’s father. “I came out of the hospital saying, ‘You know what? She’s alive, “he said.” I really don’t need to know what caused it. “
For Mrs. Widders, accepting the unknowns was more difficult, especially when Liviah had an episode of liver rejection that brought her back briefly to the hospital. The mishap made her mother wonder if Liviah might have some sort of genetic or autoimmune disorder, but the evidence found no evidence of this. In the spring, with Liviah at home for good, her parents had made peace with the possibility that they would never get answers.
And then, in April, a friend sent Mr. Widders a text on a mysterious cluster of cases of childhood hepatitis in Britain. Shortly afterwards, he saw an article stating that the Centers for Disease Control and Prevention was investigating a similar cluster in Alabama; the nine Alabama children had tested positive for an adenovirus.
For Mr. and Mrs. Widders, the cases sounded strangely familiar to them and brought them back to the hardest days. “It was a little traumatic,” Ms. Widders said. “And then there was the pain of, ‘My God, this is happening to him more than to Liviah.’
To date, more than 200 potential cases of hepatitis in children have been reported in the United States, according to the CDC. Many of the children affected have tested positive for adenovirus, in many cases adenovirus type 41, which usually causes gastrointestinal symptoms.
But the virus has not been found in all affected children, and scientists do not know why a common childhood virus could cause sudden liver damage. They are investigating whether the virus has changed and whether other factors may be contributing to the phenomenon.
Previous coronavirus infection — or, conversely, lack of adenovirus exposure during pandemic outbreaks — may have left children more vulnerable, although both hypotheses remain speculative. It is also possible that adenovirus infections always cause hepatitis in a small subset of healthy children and that scientists only now recognize the connection.
“Is it an increase in consciousness?” said Dr. William Balistreri, director emeritus of Cincinnati Children’s Pediatric Liver Care Center. “Is it a new virus? Is it a new virus in synergy with an old virus?” He added: “I don’t think we can rule out any of these theories.”
The absence of an obvious cause has also baffled parents. In April, Ashley Tenold received an unexpected call from a school nurse, who informed her that her daughter appeared to have jaundice. “It turned yellow,” said Ms. Tenold, who lives in rural Wisconsin. “There was no coughing or stomach ache. It was just another typical week in the country. “
Her daughter’s liver was a little swollen, but her case, like most, was lighter than Liviah’s. She was discharged after a few …