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Liviah’s New Liver: A Family Struggling With One Girl’s Confusing Hepatitis

It was three days before Christmas, and Elizabeth Widders was sitting in her upstairs bathroom, tying 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 had turned yellow.

She hurriedly pushed Liviah downstairs to ask her husband, Jack, for a second opinion. He also sees yellow.

Liviah and her two siblings both had jaundice as babies, and their parents, from Mason, Ohio, are familiar with the telltale signs. Mrs. Widders recalls: “I knew: This was the liver.

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

Over the past eight months, hundreds of other families have been caught in similar whirlwinds, when their otherwise healthy children developed hepatitis, which seemed unlikely. Six hundred and fifty possible cases have been 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 multiple potential causes. One leading theory is that adenoviruses, a common family of viruses that often cause flu or cold-like symptoms, may be the cause, but many questions remain.

Revealing that Liviah’s case could be part of a larger phenomenon excited her parents, who began sharing their stories in hopes of educating others about the warning signs. main.

Experts stress that these cases are extremely rare and even then, most do not require a transplant. Jack Widders, Liviah’s father, said: ‘The chance of something like this happening is extremely small.

But without a definite explanation, it’s like a bolt of lightning that can strike any family.

The first signs of trouble came on December 11, when Liviah began to rampage. At first, her parents’ excitement was overwhelming; Liviah had spent the previous night with her grandmother, who was known to be very pampered with the children. Ms. Widders recalls: “We called it ‘grandma’s hangover’.

Liviah, an energetic, healthy child, quickly recovered, but the next day, her 6-year-old brother, Jaxson, also fell ill. He had a high fever and was sick for several days. Liviah – who has gone back to school, visited a trampoline park and decorated cookies with the neighbors – seems to have avoided the worst of it.

Until a week and a half later, when her mother noticed her eyes. Her urine is also orange, Liviah revealed to her.

A diagnosis of hepatitis came as a shock. This condition has many potential causes, including exposure to toxins, heavy drinking, and hepatitis B and C viruses, often associated with intravenous drug use. Mrs. Widders stared at her husband in disbelief: “Where is she going to get hepatitis from?”

(Hepatitis can also be caused by other viruses, although Mrs. Widders didn’t know it at the time.)

That evening, Liviah was admitted to Cincinnati Children’s Hospital Medical Center. “She came in with acute liver failure,” said Dr. Anna Peters, a pediatric liver transplant doctor with Liviah’s medical group. “She’s pretty sick.”

In the days that followed, Liviah’s condition worsened.

One of the liver’s main roles is to process harmful substances, including naturally produced ammonia in the body; When the organ is not functioning properly, these toxins can travel to the brain, causing cognitive and behavioral changes. As Liviah’s ammonia levels rise, she becomes irritable and angry, screaming at her mother without provocation.

Her damaged liver, which produces proteins that help blood clot, also slows her natural clotting response, putting her at higher risk for bleeding problems.

Doctors prescribed the steroid drug Liviah to reduce inflammation and a compound called lactulose to help flush the ammonia out. She received a blood transfusion, a CT scan, an ultrasound, and a liver biopsy. The Widders stayed at the hospital while relatives cared for Jaxson and their 1-year-old daughter.

Liviah spent part of Christmas Day sedating, but woke up long enough to open several presents, including the Hungry Hungry Hippos game. “She doesn’t remember much about Christmas, but she knows that Santa has come,” Mr. Widders said.

Despite the treatments, Liviah’s blood clotting problems persisted and her ammonia levels remained high. She woke up agitated and confused. She asks the same questions – Can she go for a walk? Where has her brother been? – repeat. It was almost impossible for her to get through the Candyland game with her grandmother, who was heartbroken. “Seeing her the way we were seeing her, rapidly deteriorating before our eyes, was like, ‘How much time do we have left?’ her mother recalls.

On December 28, the doctors announced: Liviah had been placed on the transplant list. Status 1A – top priority.

The doctors decided to put Liviah on dialysis to remove some of the toxins from her blood while they waited for a match. The call came just a few days later, while Liviah’s aunt was visiting. Ms. Widders put the transplant coordinator over the speaker: They’ve got a liver for Liviah.

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

“We are staring death face to face,” Ms. Widders said.

“That’s right,” her husband said. “And so we know that our joy comes at the cost of -“

“Yes, selflessness of others,” she continued. “The tragedy of others is our miracle.”

On January 1st, Liviah received her new liver. The next day, the doctors got her out of bed, working to regain her strength.

On January 12, Liviah was discharged from the hospital. The Widders celebrated Christmas again when they returned home, and the neighbors decorated Liviah. “There was a night where everyone put them on,” said Mrs. Widders, “and we could drive around and see the lights.”

From the very beginning, doctors warned Liviah’s parents that they might never know why her liver was failing; In many cases of hepatitis in children, the clinician never finds a cause, says Dr. Peters.

In Liviah’s case, doctors ruled out a variety of common causes, but blood tests found a possible culprit to be an adenovirus.

Although there is no sign of the virus in the liver, infection with adenovirus can “trigger an abnormal immune response that then attacks the liver,” says Dr. Peters.

That’s not a completely satisfying explanation, she admits. Adenovirus does not usually lead to liver damage in healthy children, and Liviah’s adenovirus levels are low.

The mystery did not perplex Liviah’s father. “I left the hospital to go, ‘You know what? She’s alive,” he said. “I really don’t need to know what caused it.”

For Ms. Widders, accepting the unknown was even harder, especially when Liviah had a liver rejection that required a brief hospital stay. The debacle had her mother wondering if Liviah might have some kind of genetic or autoimmune disorder, but testing showed no evidence of that. In the spring, when Liviah got home well, her parents made peace with the possibility that they might never get an answer.

And then, in April, a friend sent Mr Widders a message about a cluster of mysterious childhood hepatitis cases in the UK. Soon after, he saw an article saying that the Centers for Disease Control and Prevention was investigating a similar cluster in Alabama; All nine children in Alabama tested positive for adenovirus.

To the Widders, the cases sounded strangely familiar – and set their hardest days back. Ms Widders said: ‘It was a minor injury. “And then the sadness of, ‘Oh my god, this is happening to more than just Liviah.’

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

But the virus has yet to be found in all affected children, and scientists aren’t sure why a virus common in young children could suddenly cause liver damage. They are investigating whether the virus has changed and whether other factors may be contributing to the phenomenon.

It is possible that prior infection with the coronavirus — or conversely, not being exposed to adenovirus during the shutdown — could make children more vulnerable, although both theories are still speculative. It is also possible that infection with the adenovirus always causes hepatitis in a small number of healthy children, and scientists have only recently recognized this link.

“Is that an enhanced perception?” William Balistreri, emeritus director of the Pediatric Liver Care Center at Cincinnati Children. “Is it a new virus? Is it a new virus in synergy with an old virus? ” He added, “I don’t think we can disprove any of those theories.”

The absence of a clear cause also confuses parents. In April, Ashley Tenold received an unexpected call from a school nurse who informed her that her daughter appeared to have jaundice. “It just turned yellow,” said Ms. Tenold, who lives in rural Wisconsin. “No cough, no stomachache. It was just another typical week in the country. “

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

But the experience is still confusing and scary, Ms. Tenold said: “It would be good for them to get to the bottom of it so that no more children have to face this.”

In the months since Liviah received her transplant, her parents encouraged friends and family members to sign up for organ donations, and they organized a blood transfusion on Liviah’s behalf. Liviah also helped her mother make earrings to sell to raise money for the hospital’s Liver Help Fund, which supports families of pediatric liver disease.

“We are stepping into the purpose we have,” Ms. Widders said.

Liviah’s parents also find themselves in a delicate balance with parents worried that their child might be next. They wanted others to be on the lookout for signs of liver problems – yellow skin and eyes, dark urine – but also knew that what happened to Liviah was rare.

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

Liviah, currently undergoing physical therapy, is recovering well, her parents said. The whole family, apart from 1-year-old Juliana, are also in psychotherapy to help process what they’ve been through. Liviah learns that her old liver is sick and she has been given a new one, which she names Teddi.

Mr and Mrs. Widders also hope to make a scrapbook for Liviah to record exactly what happened to her – or at least, as much as they and the experts can understand.

“She won’t remember much about it, which is amazing,” said her father, who went on to record Liviah’s liver enzyme levels in a spreadsheet. “It’s harder for parents,” he added. “The kids are very resilient.”

The family is still adjusting to the new normal, which includes immunosuppressive drugs for Liviah to prevent her body from rejecting her new liver and a new focus on hygiene to protect her from pathogens. other, which made her more vulnerable.

But Liviah went back to preschool and kicked and danced. On her recent school beach day, she donned a bikini so she could show off her 8-inch scar. She calls it her “princess mark”.

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