It was three days before Christmas, and Elizabeth Widders was sitting in her upper bathroom, tying her red and green bows to her 4-year-old daughter, Liviah. But as Liviah stood in the morning light, she noticed that her mother’s eyes were white.
She took Liviah down to her husband, Jack, to ask for a second opinion. He also saw the color yellow.
Liviah and all her two siblings had jaundice in their babies, and their parents, Ohio in Mason, knew the telltale signs. “I knew: these are liver things,” Mrs. Widders remembered.
Liviah was taken to the emergency room, where he was diagnosed with acute hepatitis, inflammation of the liver. Less than two weeks later, doctors removed his empty liver and replaced it with a new one.
Over the past eight months, hundreds of other families have been caught in similar whirlwinds, as otherwise healthy children developed hepatitis, apparently out of reach. According to the World Health Organization, there have been an estimated six hundred and fifty cases in 33 countries. At least 38 children have had a liver transplant and nine have died.
The cases have shocked experts, who are investigating a number of potential causes. One major hypothesis is that an adenovirus, usually a family of common viruses that cause symptoms similar to the flu or cold, may be responsible, but many questions remain.
The fact that Liviah’s case may have been part of a larger phenomenon has revived her parents, who have begun to share their story in order to educate them about other major warning signs.
Cases are rare, experts point out, and yet most do not require a transplant. “The probability of something like this happening is very low,” said Jack Widders, Liviah’s father.
But without a solid explanation, it feels like lightning that can hit any family.
“Where did he get the hepatitis?”
The first signs of trouble came in December. 11, when Liviah began to vomit. At first, his parents linked him to abuse; Liviah had spent the previous night with her grandmother, who was known to spoil her children with sweets. “We used to call it ‘Grandma’s Hangover,'” Mrs. Widders remembered.
Liviah, a lively child and sportswoman, quickly bounced back, but the next day, her 6-year-old brother, Jaxson, also fell ill. He developed a high fever and became ill during the day. Liviah – who had returned to school, visited a trampoline park and decorated her biscuits with her neighbors – seemed to have avoided the worst.
Until, a week and a half later, my mother noticed her eyes. Her urine was also orange, Liviah reported.
Liver inflammation is usually caused by a virus, hepatitis has many factors, side effects and stigma.
The diagnosis of hepatitis was astonishing. The condition has a number of potential causes, including toxin exposure, drinking weight, and hepatitis B and C viruses. often associated with internal drug use. Madam. Widders looked at her husband without believing, “Where did the hepatitis come from?”
(Hepatitis can also be caused by other viruses, although Ms. Widders did not know it at the time.)
That afternoon, Liviah was admitted to Cincinnati Children’s Hospital Medical Center. “He had acute liver failure,” Dr. Anna Peters, a pediatric transplant hepatologist who was a member of Liviah’s medical team. “He was pretty sick.”
Over the next few days, Liviah’s condition worsened.
One of the main functions of the liver is to process toxic substances, including naturally occurring ammonia in the body; when the organ is not functioning properly, these toxins can travel to the brain and cause cognitive and behavioral changes. As Liviah’s ammonia levels rose, she became angry and furious, shouting at her mother without provocation.
Damage to the liver, which produces proteins that help the blood to coagulate, also slowed down its natural coagulation response, leaving it at high risk for bleeding problems.
Doctors gave Liviah steroids to reduce inflammation and help remove a compound called lactulose from ammonia. He underwent blood transfusions, a TAM, an ultrasound and a liver biopsy. Sir. and Mrs. He slept at Widders Hospital while relatives cared for Jaxson and his 1-year-old daughter.
Liviah spent a quiet part of Christmas Day quietly, but woke up long enough to open some presents, including the Hungry Hungry Hippos game. “He doesn’t remember Christmas much, but he knows Santa has come,” he said. said Widders.
at the top of the list
Despite the treatments, Liviah’s coagulation problems persisted and her ammonia level remained high. He woke up confused and confused. He asked the same questions – could he go for a walk? Where was his brother? – over and over again. She could barely get past a Candyland game with her grandmother, which broke her heart. “Looking at it the way we see it, the one that is rapidly deteriorating before our eyes, is, ‘How much longer do we have?’ his mother remembered.
In December. On the 28th, the doctors broke the news: Liviah was on the transplant list. State 1A – top priority.
Doctors decided to start Liviah’s liver dialysis to remove some toxins from her blood while they waited for a match. The call came a few days later while Liviah’s aunt was visiting. Madam. Widders put the transplant coordinator on the speaker: they had a liver for Liviahr.
It was a complicated moment for Liviah’s parents, who were deeply saddened by the family of the deceased donor.
“We were looking at the village,” Mrs. said Widders.
“That’s it,” her husband said. “And so we knew it was at the expense of our joy …”
“Someone else’s disinterested‘ Yes ’,” he continued. “The tragedy of someone else was our miracle.”
In January. 1, Libya received its new liver. The next day, the doctors got him out of bed, working to regain his strength.
In January. On the 12th, Liviah was discharged from the hospital. The Widders family once again celebrated Christmas when they returned home, and the neighbors kept decorations for Liviahr. “There was one night that everyone put on,” Mrs. Widders said, “And we were able to drive and see the lights.”
Looking for a cause
From the beginning, doctors 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. said Peters.
In Liviah’s case, doctors ruled out several common triggers, but blood tests found a possible culprit: an adenobirus.
Although there was no trace of the virus in the liver, an adenovirus infection “could trigger an abnormal immune response, then attack the liver,” said Dr. said Peters.
It was not an entirely gratifying explanation, he admitted. Adenoviruses usually do not cause liver damage in healthy children, and Liviah’s adenovirus levels were low.
Mystery did not make Liviah a father. “I was released from the hospital, ‘Do you know what? He’s alive,'” he said. “I don’t need to know what caused him.”
For the lady. Widders, it was harder to accept strangers, especially when Liviah had an episode of liver rejection, and he was briefly taken to hospital. The setback prompted her mother Liviah to ask if she had any kind of genetic or autoimmune disorder, but the test found no evidence of this. By spring, when Liviah was at home forever, her parents made peace with the possibility of never having an answer.
And then, in April, a friend of Mr. Widders A text about a mysterious set of childhood hepatitis cases in Britain. Shortly afterwards, the Centers for Disease Control and Prevention saw an article saying that they were investigating a similar cluster in Alabama; Nine children in Alabama tested positive for an adenovirus.
Mr. and Mrs. What’s more, the cases were strangely familiar – and their hardest days were back in a hurry. “It was a little traumatic,” Mrs. said Widders. “And then it was, ‘Oh my, this is happening more than Liviah.'”
To date, more than 200 potential cases of hepatitis have been reported in children in the United States, according to the CDC.
But the virus has not been found in all affected children, and scientists don’t know why a common childhood virus can cause liver damage all of a sudden. They are investigating whether the virus has changed and whether other factors may have affected the phenomenon.
It is likely that a previous coronavirus infection – or, conversely, a lack of exposure to adenoviruses in pandemic blackouts – will make children more vulnerable, although both hypotheses remain speculative. It is also possible that adenovirus infections have always caused hepatitis in a small subset of healthy children and the connection was only known to scientists now.
“Has awareness increased?” said Dr. William Balistreri, Emeritus Director of the Cincinnati Children’s Pediatric Liver Care Center. “Is it a new virus? Is a new virus synergistic with an old virus?” He added.
The absence of an obvious cause has also confused parents. In April, Ashley Tenold received an unexpected call from a school nurse, who informed her that her daughter had jaundice. “It’s just yellow,” she said. Tenold, who lives in rural Wisconsin. “There was no coughing, no stomach ache. It was another normal week in the country. ”
Her daughter’s liver was slightly swollen, but her case, like most, was lighter than Liviah’s. He was discharged after a few days in hospital.
But the experience was still confusing and frightening, Ms. Tenold said: “It would be good for them to get to the bottom of this so that more children don’t have to deal with it.”
In the months following Liviah’s transplant, her parents encouraged friends and relatives to register organ donors, and they collected blood on Liviah’s behalf. Liviah also helps her mother make earrings for sale by raising money for the hospital’s Liver Helping Hands Fund, which provides support to the families of liver patients.
“We’re getting into this goal of ours,” Mrs. said Widders.
Liviah’s parents have also struck a delicate balance with their parents who are worried about whether their children will be next. Others want to be alert for signs of liver problems — yellow skin and eyes, dark urine — but also to know that what happened to Liviah is strange.
“You can’t react to every vomit, you can’t react to every cold,” he said. said Widders. “But the liver signals are unmistakable.”
Liviah, who is currently in physical therapy, is recovering well, her parents said. The whole family, with the exception of 1-year-old Juliana, is in psychotherapy to help process what she has experienced. Liviah knows that her old liver was sick and that she was given a new one, which she named Teddi.
Sir. and Mrs. Widders also hopes to make a scrapbook for Liviahr that will tell him exactly what happened to him, or at least to the extent that they and the experts have been able to make sense of it.
“He won’t remember much, he’s very big,” said his father, who continued to record Liviah’s liver enzyme levels on a spreadsheet. “It’s a lot harder for parents,” he added. “Kids are very resilient.”
The family is still adjusting to a new normal, including immunosuppressive drugs for Liviahr, so that her body does not exclude a new liver and a renewed hygiene care to protect her from other pathogens, which is now more vulnerable.
But Liviah returned to preschool and football and dance. On her school beach day, she wore a bikini to show off an eight-inch scar. She calls it her “princess brand”.