Libya’s new lever

The story of a family battling mysterious hepatitis

Posted at 8:00 am

Emily Anthes
New York Times

It was three days before Christmas, and Elizabeth Weeders was in her upstairs bathroom fixing red and green curls in her 4-year-old daughter Livia’s hair. But as Libya stood in the morning light, her mother noticed that the whites of her eyes had turned yellow.

She takes Livia downstairs to ask her husband Jack for a second opinion. She also saw a yellow tinge in his eyes.

Libya, her brother and sister all had jaundice as children, and their parents, who are from Mason, Ohio, were familiar with the symptoms. “I knew it was a liver problem,” Elizabeth Weeders recalls.

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

A recurring problem

In the past eight months, hundreds of other families have been caught in a similar cyclone, with their otherwise healthy children infected with hepatitis, apparently unexpectedly.

According to the World Health Organization, about 650 possible cases have been reported in 33 countries. At least 38 children needed liver transplants and 9 died.

Photo by Maddie Magarave, The New York Times

Livia Weeders is rocking their home in Ohio with her sister Juliana.

This has confused experts in the field, and they are exploring various possible causes. One major hypothesis is that an adenovirus, a family of common viruses that usually causes flu-like or cold-like symptoms, leaves many questions unanswered.

The revelation that the Livia incident could be part of a larger event prompted her parents, who began telling their stories in hopes of educating others about the main red flag.

Experts point out that these cases are extremely rare and that, even in this context, most do not require replacement. “The risk is very low,” said Jack Weeders, Libya’s father.

But without a strong explanation, it sounds like a thunderbolt that could hit any family.

Where can hepatitis be caught?

The first signs of the problem appeared on December 11, when Libya began to vomit. At first, her parents blamed it on overeating: Livia spent the night at her grandmother’s house, known for spoiling the children’s treats. Parents call it “Grandma’s Hangover,” recalls Elizabeth Weeders.

Libya, a lively and athletic child, recovers quickly, but the next day her 6-year-old brother Jackson also falls ill. He had a high fever and was ill for several days. Livia, who went back to school, visited a trampoline park and set up cookies with neighbors, seems to have avoided the worst.

Until, a week and a half later, his mother noticed his eyes. Her urine was also orange, Libya told her.

The diagnosis of hepatitis was a shock. The disease can have a variety of causes, including exposure to toxins, excessive alcohol consumption, and hepatitis B and C viruses, often associated with intravenous drug use.

M.Me Weeders looks at her husband in disbelief: “Where can he get hepatitis? (Hepatitis can be caused by other viruses, but mMe Weeders didn’t know it then.)

That evening, Livia was admitted to Cincinnati Children’s Hospital Medical Center. “She is suffering from acute liver failure,” he said.D Anna Peters, a pediatric transplant hepatologist who was part of the Libyan medical team. “She was very sick.”

Over the next few days, the situation in Libya began to deteriorate.

Photo by Maddie Magarave, The New York Times

The Widders family uses a symbol to tell Liviah’s story, raise awareness of signs of liver problems and encourage people to sign up to become organ donors.

One of the primary roles of the liver is to process toxins, including ammonia, which are naturally produced in the body; When the organ does not function properly, these toxins can travel to the brain, causing cognitive and behavioral changes.

As Livia’s ammonia levels rise, she becomes annoyed and angry, screaming at her mother without provocation.

Damage to his liver, which produces proteins that help blood clot, also slows his normal clotting, which puts him at higher risk for bleeding problems.

Physicians prescribed Livia steroids to reduce inflammation and a compound called lactulose to eliminate ammonia.

She has had blood transfusions, CT scans, ultrasounds and a liver biopsy. Libya’s parents slept in the hospital, while relatives cared for Jackson and their 1-year-old daughter.

Libya has spent some part of Christmas Day in peace, but has had enough time to open a few gifts, including the Hungry Hungry Hippos game. “He doesn’t remember much about Christmas, but he knows Santa has arrived,” Jack Weeders said.

At the top of the list

Despite the treatment, Livia’s clotting problems persisted and her ammonia levels were high. He woke up restless and confused. He asked the same question – can he go for a walk? Where was his brother? – Again and again. He could hardly finish a game in Candyland with his heartbroken grandmother.

“Seeing her rapid decline in front of our eyes, we were amazed at how long we’ve been together,” her mother recalls.

On December 28, doctors broke the news: Libya has been placed on a transplant list. Status 1A – Top priority.

Doctors decided to perform liver dialysis on Livia until some toxins were removed from her blood.

A few days later the phone rang while Livia’s aunt was visiting. Elizabeth Weeders put the transplant coordinator in the loudspeaker: they had a lever for Libya.

It was a difficult time for Livia’s parents, with the deceased donor’s family in mourning.

Photo by Maddie Magarave, The New York Times

Livia Weeders

“We were on the verge of death,” said Elizabeth Weeders.

“It’s true,” her husband replied. And so, we knew that our joy was worth … ”

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

1Of In January, Libya received its new lever. The next day, the doctors took her out of bed to regain her strength.

Photo by Maddie Magarve, New York Times

Stains as a result of the operation of Livia Weeders

On January 12, Libya was released from the hospital. Back home, the Widders family celebrates Christmas again, and the neighbors save their decorations for Liviah. Elizabeth Weeders said, “There was a night when everyone planted them, and we were able to walk around and see the light. A

A cause search

From the beginning, doctors warned Libya’s parents that they might never know why her liver was failing; In many cases of pediatric hepatitis, doctors never find the cause, Peters said.

In the case of Libya, doctors ruled out various common triggers, but blood tests revealed a potential culprit: an adenovirus.

Although there were no symptoms of the virus in the liver, an adenovirus infection “can trigger an abnormal immune response that then attacks the liver,” he said.D Peters.

This is not a completely satisfactory explanation, he admits. Adenoviruses usually do not harm the liver of healthy children, and Libya had low levels of adenovirus.

Mystery did not frighten Libya’s father. “I left the hospital thinking, ‘You know what? He’s alive,'” she said. I don’t really need to know what caused hepatitis.

To date, more than 200 possible cases of hepatitis in children have been reported in the United States, according to the CDC. Many of the infected children tested positive for adenovirus – in many cases, adenovirus type 41, which usually causes gastrointestinal symptoms.

But the virus was not found in all infected children, and scientists are not sure why a common childhood virus can cause sudden liver damage.

They are trying to find out if the virus has changed and other factors may have contributed to the phenomenon.

It is possible that previous coronavirus infections – or, conversely, the lack of adenovirus exposure during the epidemic – made children more vulnerable, although both of these hypotheses remain speculative.

It is also possible that adenovirus infection has always caused hepatitis in a small subset of healthy children, and scientists are now only recognizing this link.

“Is it about raising awareness? Said D.r Emeritus, director of the pediatric liver care center at William Ballisteri, Cincinnati Children’s Hospital. “Is it a new virus?” Is it a new virus in combination with an old virus? He added: “I don’t think we can disprove any of these theories.”

A new goal

In the months following Libyah’s transplant, her parents encouraged friends and family members to register as organ donors, and they organized a blood drive for Libya.

Livia also helped her mother make earrings that she sold to raise money for the hospital’s Liver Relief Fund, which helps families with children with liver disease.

Photo by Maddie Magarve, New York Times

Elizabeth Weeders and her daughter Livia are making earrings.

“We have chosen the path we have chosen,” said Elizabeth Weeders.

The family is still adjusting to a new routine, including immunosuppressive drugs for Livia – to prevent her body from rejecting a new liver – and a new focus on hygiene to protect her from further agents. Pathogen, for which it is now more risky.

But Libya went back to kindergarten, soccer and dancing. On her recent beach day at school, she wore a bikini so she could show off her 8-inch mark. She calls it her “princess sign”.

This article was originally published New York Times.

Learn more

  • Yellow skin and eyes, dark urine
    Libyan parents want people to be aware of the symptoms of liver problems – yellow skin and eyes, dark urine – but also to know that what happened to Libya is rare.

    Source: New York Times

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