new liver livia

The story of a family suffering from mysterious hepatitis

Posted at 8:00 am

Emily Anthes
New York times

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

She rushed to Livia to ask for a second opinion from her husband, Jack. He saw yellow in her eyes as well.

Leviah and her brother and sister all developed jaundice when they were babies, and their Mason, Ohio parents were aware of the telltale signs. “I knew it was a liver problem,” Elizabeth Widders recalls.

They took Liviah to the emergency room, where she was diagnosed with acute hepatitis B and hepatitis B. Less than two weeks later, doctors removed his worn out liver and replaced it with a new one.

frequent problem

Over the past eight months, hundreds of other families have been caught up in a similar whirlwind, as their children — otherwise healthy — have contracted hepatitis, seemingly unexpectedly.

About 650 probable cases have been reported in 33 countries, according to the World Health Organization. At least 38 children required a liver transplant and 9 died.

Photo: Maddy Mujarvie, The New York Times

Liviah and Edris swing alongside her sister Juliana at their Ohio home.

These cases have baffled experts, and they are investigating various possible causes. One major hypothesis is that adenovirus, a family of common viruses that usually cause flu- or cold-like symptoms, could be responsible, but many questions remain.

The revelation that the Leviah affair might be part of a larger phenomenon spurred her parents, who set out to tell their story in hopes of educating others about major red flags.

Experts note that these cases are extremely rare and that most of them, even in this context, do not need a transplant. “The risks of something like this happening are very low,” said Jack Widders, Levi’s father.

But without a solid explanation, it looks like a thunderbolt could strike any family.

Where can you get hepatitis?

The first signs of the disorder appeared on December 11, when Leviah began vomiting. At first, her parents blamed her overeating: Liviah had spent the previous night at her grandmother’s house, who had been known to spoil children with treats. Parents described it as “grandmother’s hangover,” Elizabeth Widders recalls.

An athletic and energetic kid, Liviah recovered quickly, but the next day her brother, 6-year-old Jackson, fell ill. He developed a high fever and remained ill for several days. It seems that Liviah, who has gone back to school, visited the trampoline park and decorated biscuits with the neighbours, has avoided the worst.

Even after a week and a half, her mother noticed her eyes. Leviah told her her urine was orange, too.

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

MI Food vendors stare at her husband in disbelief: “Where could you get hepatitis? (Hepatitis can also be caused by other viruses, but M.I Widers didn’t know that at the time.)

That evening, Liviah was admitted to Cincinnati Children’s Hospital Medical Center. Dr. said.Dr Anna Peters, Pediatric Liver Transplant Specialist who was part of Levi’s Medical Team. She was very ill. »

Over the next few days, Livia’s condition deteriorated.

Photo: Maddy Mujarvie, The New York Times

A sign used by the Widders family to tell Liviah’s story, to raise awareness of the signs of liver problems and to encourage people to sign up to become organ donors.

An essential role of the liver is to process toxic substances, including ammonia that the body naturally produces; When the organ is not working properly, these toxins can travel to the brain, causing cognitive and behavioral changes.

As Liviah’s ammonia level rose, she became nervous and angry, screaming at her mother without any provocation.

Damage to the liver, which produces proteins that help blood clot, also slows its normal clotting, putting it at high risk for bleeding problems.

Doctors gave Leviah steroids to reduce inflammation and a compound called lactulose to help flush out the ammonia.

She underwent blood transfusions, CT scans, ultrasounds, and a liver biopsy. Levi’s parents were sleeping in the hospital, while relatives were looking after Jackson and their one-year-old daughter.

Levih spent part of Christmas Day drugged, but woke up long enough to open some gifts, including a Hungry Hippos. “She doesn’t remember much about Christmas, but she does know that Santa Claus has come,” said Jack Wieders.

top of the list

Despite treatment, Leviah’s clotting problems persisted and her ammonia levels remained high. I woke up worried and confused. I asked the same questions – can she go for a walk? Where was his brother – again and again. She barely managed to finish a game of Candyland with her grieving grandmother.

“When we watched her rapidly deteriorate before our eyes, we wondered how long we had been together,” her mother recalls.

On December 28, doctors broke the news: Liviah was placed on the transplant list. Case 1A – High priority.

Doctors decided to put Leviah on dialysis to remove some toxins from her blood so that she could be matched.

The call came a few days later when Aunt Livia was visiting. Elizabeth Widders put the transplant coordinator on megaphone: They had a liver for Liviah.

It was a complicated time for Livia’s parents, as their joy eased the grief of the deceased donor’s family.

Photo: Maddy Mujarvie, The New York Times

livia and studying

“We were staring at death’s face,” Elizabeth Widders said.

Her husband replied, “That’s right.” Thus, we learned that our joy was at the expense of…”

And she continued, “Another unselfish ‘yes’ person. Someone else’s tragedy was our miracle.”

1Verse January, Livia got her new liver. The next day, the doctors took her out of bed to regain her strength.

Photo: Maddy Mujarvie, The New York Times

The scar caused by the Levi’s Weeders operation

On January 12, Liviah was discharged from the hospital. At home, the Widders family celebrated Christmas again, and the neighbors kept their decorations for Leviathan. “There was one night when everyone wore it, and we were able to walk around and see the lights,” says Elizabeth Widders.

Searching for a reason

From the start, doctors warned Leviah’s parents that they might never know the cause of liver failure; Peters says that in many cases of hepatitis in children, doctors never find the cause.

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

Although there are no signs of the virus in the liver, the adenovirus infection can “cause an abnormal immune response which then attacks the liver.”Dr Peters.

I acknowledge that this is not a completely satisfactory explanation. Adenoviruses generally do not cause liver damage in healthy children, and adenovirus levels in fibrous were low.

The mystery did not frighten Livia’s father. “I left the hospital thinking, ‘You know what?’ He said, ‘She’s alive.’ I don’t really need to know the cause of ‘hepatitis.’

To date, more than 200 probable cases of hepatitis in children have been reported in the United States, according to the Centers for Disease Control and Prevention. Several infected children have tested positive for adenovirus – in many cases, type 41 adenovirus, which usually causes gastrointestinal symptoms.

But the virus is not found in all infected children, and scientists aren’t entirely sure why the common childhood virus suddenly causes liver damage.

They are looking to see if the virus has changed and if there are other factors that may be contributing to this phenomenon.

It is possible that previous infection with MERS – or, conversely, reduced exposure to adenovirus during the pandemic stopped – made children more vulnerable, although these two hypotheses remain speculative.

It’s also possible that adenovirus infection has always caused hepatitis in a small subset of healthy children and that scientists only now have identified the link.

“Is it increasing awareness?” said Dr.s William Pallisteri, MD, director emeritus of the Children’s Liver Care Center at Cincinnati Children’s Hospital. “Is this a new virus? Is it a new virus synergistic with an old virus? I don’t think we can rule out any of these theories,” he added. »

new goal

In the months following Liviah’s transplant, her parents encouraged friends and family members to register as organ donors, and organized a blood drive on Liviah’s behalf.

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

Photo: Maddy Mujarvie, The New York Times

Elizabeth Widders and her daughter Livia make earrings.

“We’re going down the path we’ve chosen,” Elizabeth Widders said.

The family is still adjusting to the new normal, which includes livia’s immunosuppressive drugs – to prevent her body from rejecting the new liver – and a renewed interest in hygiene to protect her from other disease-causing agents, to which she is now more vulnerable.

But Liviah returned to kindergarten, football and dancing. On her last beach day at her school, she wore a bikini so she could show off her 8-inch scar. She calls her “Princess Mark”.

This article was originally published in The New York Times.

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  • Yellowing of the skin and eyes, dark urine
    Livia’s parents want people to be alert for signs of liver problems — yellowing of the skin and eyes, dark urine — but also to know that what happened to Livia is a rare occurrence.

    source : New York times

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