It was three days before Christmas, and Elizabeth Weeders was sitting in her upstairs bathroom, her 4-year-old daughter Livia tying a red and green bow to her hair. But as Libya stood in the morning light, her mother noticed that the white part of her eyes had turned yellow.
She takes Livia downstairs to ask her husband Jack for a second opinion. He also saw a yellow tinge.
Libya and her two siblings all had jaundice as children, and their parents from Mason, Ohio, were familiar with the symptoms. “I knew it was a liver thing,” Mrs. Weeders recalled.
They took Livia to the emergency room, where she was diagnosed with acute hepatitis, hepatitis. Less than two weeks later, doctors removed his failed liver and replaced it with a new one.
In the past eight months, hundreds of other families have been caught in a similar cyclone because their otherwise healthy children have developed hepatitis, seemingly out of the blue. According to the World Health Organization, six hundred and fifty possible cases have been reported in 33 countries. At least 38 children needed liver transplants, and nine died.
The lawsuits have stunned experts, who are still investigating. One major hypothesis is that an adenovirus is a family of common viruses that can usually cause flu- or cold-like symptoms, but many questions remain.
The revelation that Livia’s case could be part of a larger event has provoked her parents, who have begun sharing their stories in hopes of educating others about the main warning signs.
Cases are extremely rare, experts insist, and yet, most do not require a transplant. “It’s very unlikely that anything like that will happen,” said Jack Weeders, Libya’s father.
But without a firm explanation, it felt like lightning could hit any family.
‘Where did he get hepatitis?’
The first signs of trouble appeared on December 11, when Libya began to shed. At first, his parents made it for extra enjoyment; Livia spent the night with her grandmother, who was known for spoiling children with treats. “We called it ‘Grandma’s Hangover,'” Mrs. Weeders recalls.
Livia, a lively, athletic child, returns quickly, but the next day, her 6-year-old brother, Jackson, also falls ill. He had a high fever and had been ill for several days. Livia – who returned to school, visited a trampoline park and set up cookies with neighbors – seemed to have avoided the worst.
Until, a week and a half later, when his mother noticed his eyes. Her urine was also orange, Livia told her.
An inflammation of the liver is usually caused by a virus, hepatitis has many complex causes, side effects and stigma.
The diagnosis of hepatitis came as a shock. There are a number of possible causes for this condition, including exposure to toxins, heavy drinking, and the hepatitis B and C viruses. Which is often associated with intravenous drug use. Mrs. Weeders stared at her husband in disbelief: “Where did he get hepatitis?”
(Hepatitis can be caused by other viruses, although Mrs. Weeders did not know it at the time.)
That evening, Livia was admitted to Cincinnati Children’s Hospital Medical Center. “She suffered from acute liver failure,” said Dr. Anna Peters, a pediatric transplant hepatologist who was part of the Libyan medical team. “She was pretty sick.”
In the days that followed, the situation in Libya deteriorated.
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 Liviah’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 to clot, also slows his normal clotting response, putting him at higher risk for bleeding problems.
Physicians prescribed Livia steroids to reduce inflammation and a compound called lactulose to eliminate ammonia. She had a blood transfusion, CT scan, ultrasound and a liver biopsy. Mr. and Mrs. Weeders 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 some gifts, including the Hungry Hungry Hippos game. “I don’t remember much about his Christmas, but he knows Santa has arrived,” said Mr. Weeders.
At the top of the list
Despite treatment, Livia’s clotting problems persisted and her ammonia levels were high. He woke up excited and confused. He asked the same question – can he go for a walk? Where was his brother? – Again and again. He could just go through a game of candyland with his grandmother, who was heartbroken. “The way we were looking at him, it was deteriorating so fast before our eyes, it’s like, ‘How much longer do we have?’ Remember her mother.
On December 28, doctors broke the news: Libya has been placed on a transplant list. Status 1A – Top priority.
Doctors decided to start liver dialysis for Libya while they were waiting for the match to remove some toxins from her blood. The call came just a few days later, when Livia’s aunt was visiting. Mrs. Weeders put the transplant coordinator on the speakerphone: they had a lever for Libya.
It was a complicated moment for Livia’s parents, their joy mixed with mourning for the family of the deceased donor.
“We were facing death,” said Mrs. Weeders.
“That’s right,” said her husband. “And so we knew our happiness was at stake.”
“Someone else’s selfless ‘yes,'” he continued. “Someone else’s tragedy was our miracle.”
On January 1, Libya received her new lever. The next day, the doctors took her out of bed and worked to regain her strength.
On January 12, Libya was released from the hospital. The Widders family celebrated Christmas again when they returned home, and the neighbors left their decorations for Libya. “There was a night when everyone was wearing them,” said Mrs. Weeders, “and we were able to drive around and see the lights.”
Looking for a reason
From the beginning, doctors warned Libya’s parents that they would never know why her liver had failed; In many cases of pediatric hepatitis, doctors never find a cause, said. Peters said.
In the case of Libya, doctors ruled out various common triggers, but blood tests turned out to be a potential culprit: an adenovirus.
Although there was no sign of the virus in the liver, an adenovirus infection “can trigger an abnormal immune response that then attacks the liver,” Dr. Peters said.
This was not a completely satisfactory explanation, he admitted. Adenovirus usually does not lead to liver damage in healthy children, and Libya had low levels of adenovirus.
The mystery did not confuse Livia’s father. “I’m leaving the hospital,‘ You know what? He is alive, “he said. “I don’t really need to know what caused it.”
For Mrs. Weeders, it was difficult to accept the unknown, especially when there was an episode of Livia’s liver rejection that briefly brought her back to the hospital. The tragedy prompted her mother to speculate that Liviyah may have some kind of genetic or autoimmune disorder, but tests found no evidence of this. In the spring, at Libya’s home for good, her parents made peace with the possibility that they would never get an answer.
And then, in April, a friend sent Mr. Weeders a text about a mysterious cluster of childhood hepatitis cases in Britain. Shortly afterwards, he saw an article saying that the Centers for Disease Control and Prevention was investigating a similar cluster in Alabama; Nine children in Alabama tested positive for an adenovirus.
To Mr. and Mrs. Weeders, the cases seemed very familiar – and quickly brought back their most difficult days. “It was a little painful,” said Mrs. Weeders. “And then there was the sadness, ‘Oh my God, this is happening more than just Libya.’
To date, more than 200 possible hepatitis cases have been reported in children in the United States, with many of the infected children tested positive for adenovirus according to the CDC – in many cases, adenovirus type 41, which usually causes gastrointestinal symptoms.
But the virus has not been found in infected children, and scientists aren’t sure why a common childhood virus can cause sudden liver damage. They are investigating whether the virus has changed and whether other factors may have contributed to the phenomenon.
It is possible that a previous coronavirus infection – or, conversely, a lack of adenovirus exposure during the cessation of the epidemic – made 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 scientists are now simply identifying the connection.
“Is this an increased awareness?” Said Dr. William Ballisterry, Emeritus Director of the Pediatric Liver Care Center at Cincinnati Children’s. “Is it a new virus?” Is it a new virus in combination with the old one? ” He added, “I don’t think we can dismiss any of these theories.”
The absence of an obvious reason has also confused parents. In April, Ashley Tenland received an unexpected call from a school nurse who informed her that her daughter had jaundice. “She’s just turned yellow,” said Mrs. Tenland, who lives in rural Wisconsin. “There was no cough, no abdominal pain. It was another normal week in the country. “
Her daughter’s liver was slightly swollen, but her case, like most, was found to be lighter than Libya’s. He was released after a few days in hospital.
But the experience was still confusing and frightening, Mrs. Tenland said: “It would be better for them to go to the bottom of it so that more kids don’t have to deal with it.”
A new purpose
In the months following Livia’s transplant, her parents encouraged friends and family members to register as organ donors, and they performed a blood transfusion in Livia’s name. Livia is also helping her mother make earrings to raise money for the hospital’s Liver Helping Hands Fund, which helps support families of pediatric liver patients.
Mrs Weeders said: “We are working towards this goal.
Libyan parents have seen a fine balance with parents who are worried that their children may be on their side. They want to alert others to the symptoms of liver problems – yellow skin and eyes, dark urine – but they also know that what happened to the livia is rare.
“You can’t respond to every vomit, you can’t respond to every cold,” Mr Weeders said. “But the symptoms of the liver are incredible.”
Libya, who is currently undergoing physical therapy, is recovering, her parents said. With the exception of 1-year-old Juliana, the whole family is in psychotherapy to help them process what they have gone through. Livia knows that her old liver is sick and she has been given a new one, which she named Teddy.
Mr. and Mrs. Weeders are also hoping to create a scrapbook for Libya that will explain exactly what happened to her – or at least as much as they and the experts understand.
“She doesn’t remember much of it, which is so great,” said her father, who was about to record a spreadsheet of Liviyah’s liver enzyme levels. “It’s hard for parents,” he added. “Kids are very resilient.”
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 other pathogens, for which she now focuses more. Risky.
But Libya returned to preschool and soccer and dancing. On her recent beach day at school, she wore a bikini so she could show off her eight-inch mark. She calls it her “princess sign.”