Liviah’s New Liver: A Family Struggles With One Girl’s Surprising Hepatitis

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It was three days before Christmas, and Elizabeth Widders was perched in her upstairs bathroom, wearing red and green bows in the hair of her 4-year-old daughter, Liviah. But as Liviah stood in the morning light, her mother noticed that the whites of her eyes were turning yellow.

She took Liviah downstairs to ask her husband, Jack, for a second opinion. He also saw the yellow hue.

Liviah and her two siblings all had jaundice as infants, and their parents from Mason, Ohio were familiar with these symptoms. “I knew it: It’s the liver thing,” Ms. Widders recalled.

They took Liviah to the emergency room and she was diagnosed with acute hepatitis, which is inflammation of the liver. Less than two weeks later, doctors removed his failing liver and replaced it with a new one.

Over the past eight months, hundreds of other families have been caught in similar hurricanes. healthy children developed hepatitis, seemingly out of nowhere. Six hundred and fifty possible cases Reported in 33 countries, according to the World Health Organization. At least 38 children required liver transplants and nine died.

The cases have baffled experts who are investigating a variety of potential causes. A leading hypothesis is that an adenovirus, a common family of viruses that typically cause flu or cold-like symptoms, may be responsible, but many questions remain.

The revelation that Liviah’s case may be part of a larger case spurred her newfound family into action. to share they Story in hopes of educating others about the important warning signs.

Experts emphasize that cases are extremely rare, and even then, most do not require a transplant. “The probability of such a thing happening is extremely low,” said Liviah’s father, Jack Widders.

But without a solid explanation, it sounds like lightning that could strike any family.

The first signs of trouble came on December 11, when Liviah started vomiting. At first, her parents described it as overindulgence; Liviah had spent the night before with her grandmother, who is known for spoiling children. “We called it ‘grandma hangover,'” Miss Widders recalled.

A lively, athletic child, Liviah recovered quickly, but her 6-year-old brother, Jaxson, also fell ill the next day. His fever rose and he was sick for days. Returning to school, visiting a trampoline park, and decorating cookies with neighbors, Liviah seemed to have survived the worst.

Until a week and a half later, when her mother noticed her eyes. His urine was also orange, Liviah explained to him.

The diagnosis of hepatitis came as a shock. The condition has a wide variety of potential causes, including exposure to toxins, heavy drinking, and hepatitis B and C viruses. often associated with intravenous drug use. Mrs. Widders looked at her husband in disbelief: “Could he have gotten hepatitis?”

(Although Ms. Widders didn’t know this at the time, hepatitis can be caused by other viruses.)

That evening, Liviah was admitted to Cincinnati Children’s Hospital Medical Center. Pediatric transplant hepatologist who is part of Liviah’s medical team, Dr. “She came in with acute liver failure,” Anna Peters said. “She was pretty sick, she.”

In the following days, Liviah’s condition worsened.

One of the liver’s primary roles is to process toxic substances, including naturally produced ammonia in the body; when the organ is not working properly, these toxins can travel to the brain causing cognitive and behavioral changes. As Liviah’s ammonia levels rose, she became angry and enraged, screaming unprovoked at her mother.

Damage to his liver, which produces proteins that help blood clot, also slowed the natural clotting response, putting him at higher risk for bleeding problems.

Doctors prescribed Liviah steroids to reduce inflammation and a compound called lactulose to help flush out ammonia. Blood transfusion, computed tomography, ultrasound and liver biopsy were performed. While Mr and Mrs Widders were in the hospital, they cared for their relative Jaxson and their 1-year-old daughter.

Liviah spent part of Christmas Day calming down, but woke up long enough to open some presents, including the Hungry Hungry Hippos game. “He doesn’t remember much about Christmas, but he knows Santa Claus is coming,” said Mr. Widders.

Despite the treatments, Liviah’s clotting problems persisted and her ammonia levels remained high. He woke up excited and confused. He asked the same questions – Can he go for a walk? Where was his brother? – over and over again. He barely survived a Candyland game with his heartbroken grandmother. “Seeing him as we see him deteriorates fast before our eyes, ‘How much time do we have?’ as. his mother reminded him.

On December 28, the doctors gave the news: Liviah was placed on the transplant list. Case 1A — highest priority.

The doctors decided to start Liviah on liver dialysis to remove some of the toxins from her blood while she awaited a match. The call came a few days later, when Liviah’s aunt was visiting. Ms. Widders put the transplant coordinator on speaker: They had livers for Liviah.

It was a complicated moment for Liviah’s parents, their joy tempered by grief for the deceased donor’s family.

“We were looking at the face of death,” said Mrs. Widders.

“Correct,” said her husband. “And so we knew that our joy came at the expense of -“

“Someone else’s selfless ‘Yes’,” he continued. “Someone else’s tragedy was our miracle.”

On January 1, Liviah got her new liver. The next day, doctors pulled him out of bed, trying to regain his strength.

On January 12, Liviah was discharged from the hospital. When the Widders family returned home, they celebrated Christmas again and the neighbors continued their decorations for Liviah. “There was a night where everybody was wearing them,” said Ms. Widders, “and we could just walk around and see the lights.”

Doctors had warned Liviah’s parents from the very beginning that they would never know why her liver was failing; Dr. In many cases of pediatric hepatitis, clinicians never find a cause, Peters said.

In Liviah’s case, doctors ruled out various common triggers, but blood tests revealed a possible culprit: an adenovirus.

Dr. Although there were no signs of virus in the liver, an adenovirus infection may have “triggered an abnormal immune response that then attacked the liver,” Peters said.

That wasn’t a completely satisfactory explanation, he admitted. Adenoviruses do not typically cause liver damage in healthy children, and Liviah’s adenovirus levels were low.

The mystery did not frighten Liviah’s father. “I left the hospital, ‘You know what? He is alive,” he said. “I don’t need to know what’s causing it.”

It was harder for Ms. Widders to accept the unknown, especially when Liviah had a case of liver rejection that briefly brought her back to the hospital. The setback made her mother wonder if Liviah had some kind of genetic or autoimmune disorder, but tests found no evidence of it. In the spring, since Liviah was home forever, her parents were reconciled to the prospect of never getting an answer.

And then, in April, a friend sent Mr Widders a text about a mysterious cluster of childhood hepatitis cases in England. After a while, he saw an article like this. The Centers for Disease Control and Prevention was investigating A similar cluster in Alabama; All nine children from Alabama had tested positive for an adenovirus.

To Mr. and Mrs. Widders, the cases were eerily familiar, and they brought back their hardest days in an instant. “It was a little traumatic,” said Ms. Widders. “And then there was the ‘Oh my God, this is happening to more than just Liviah’ pain.”

Up to the present, More than 200 potential cases of hepatitis It has been reported in children in the United States, according to the CDC. Most affected children tested positive for an adenovirus – adenovirus type 41, which in most cases typically causes gastrointestinal symptoms.

But the virus wasn’t found in all affected children, and scientists aren’t sure why a common childhood virus suddenly causes liver damage. They are investigating whether the virus has changed and whether other factors contribute to the phenomenon.

While both hypotheses remain speculative, it is possible that a previous coronavirus infection – or, conversely, no exposure to adenoviruses during pandemic shutdowns – left children more vulnerable. It’s also possible that adenovirus infections always cause hepatitis in a small subset of healthy children, and scientists are only now realizing this link.

“Is this a heightened awareness?” said. Honorary director of the Cincinnati Children’s Pediatric Liver Care Center, Dr. William Balistreri. “A new virus? A new virus in synergy with an old virus?” “I don’t think we can rule out any of these theories,” he added.

The lack of an obvious reason also surprised the parents. In April, Ashley Tenold received an unexpected call from a school nurse, reporting that her daughter had jaundice. “It was just turning yellow,” said Ms. Tenold, who lives in rural Wisconsin. “There was no cough, no stomachache. It was just an ordinary week in the country.”

Her daughter’s liver was slightly inflamed, but like most, her condition turned out to be milder than Liviah’s. She was discharged after a few days in the hospital.

But the experience was still confusing and frightening, said Ms. Tenold: “It would be nice for them to get to the heart of the matter so that more children don’t have to deal with it.”

In the months since Liviah’s transplant, her family has encouraged friends and family members to register as organ donors and have given blood transfusions in Liviah’s name. Liviah also helps make earrings to sell to her mother to raise money for the hospital’s Liver Helping Hands Fund, which provides assistance to the families of pediatric liver patients.

“We’re stepping up to that goal that we have,” said Ms. Widders.

Liviah’s parents also found themselves in a delicate balance, with parents worried that their child might be next. They want others to be alert for signs of liver problems (yellow skin and eyes, dark urine) but also to know that what happens to Liviah is rare.

“You can’t react to every vomit, you can’t react to every cold,” said Mr Widders. “But the liver signs are clear.”

Her family said that Liviah, who is currently undergoing physical therapy, is recovering. Except for 1-year-old Juliana, the entire family is undergoing psychotherapy to process their experiences. Liviah knows that her old liver is sick and that she has been given a new liver, which she calls Teddi.

Mr. and Mrs. Widders are also hoping to release an album that will describe exactly what happened to Liviah – or at least they and the experts were able to make sense of it.

“She won’t remember many of them, which is great,” said Liviah’s father, who continued to record her liver enzyme levels in a spreadsheet. “It’s much harder for parents,” he added. “Children are very resilient.”

The family is still adjusting to a new normal that includes taking immunosuppressive drugs to prevent Liviah’s body from rejecting the new liver, and a refocus on hygiene to protect her from other pathogens to which she is now more vulnerable.

But Liviah is back in kindergarten, soccer and dancing. On her last beach day of school, she wore a bikini to show off her eight-inch scar. She calls him the “princess sign.”

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