Liviah’s New Liver: A Family Grapples With a Girl’s Puzzling Hepatitis

Three days before Christmas, Elizabeth Widders sat in the bathroom upstairs and put a red and green bow on the hair of her 4-year-old daughter Libya. But as Revere stood in the morning light, her mother noticed that the white of her eyes turned yellow.

She hurried downstairs in Libya and asked her husband Jack for a second opinion. He also saw her yellow tint.

Libya and her two siblings all suffered from jaundice as babies. Parents from Mason, Ohio were familiar with the obvious signs. “I knew: this is the liver,” recalled Mrs. Widders.

They took Libya to the emergency room, where she was diagnosed with acute hepatitis, an inflammation of the liver. In less than two weeks, her doctor removed her dysfunctional liver and replaced it with her new liver.

Over the last eight months, hundreds of other families have been involved in similar whirlwinds. Otherwise, healthy children suddenly developed hepatitis. 650 possible cases Reported in 33 countries, According to the World Health Organization. At least 38 children needed a liver transplant and 9 died.

The incident confused experts investigating various potential causes. One of the main hypotheses is that adenovirus, a family of common viruses that cause symptoms like the flu and colds, can be the cause, but many questions remain.

The revelation that the Libyan case may be part of a larger phenomenon enlivened her parents who began. share their Talk Expecting to educate others about important warning signs.

Cases are very rare and experts emphasize, yet most do not require a transplant. “It’s very unlikely that this will happen,” said Libyan father Jack Weiders.

But without a solid explanation, it feels like a lightning bolt that can hurt any family.

“Where did she get hepatitis?”

The first signs of trouble occurred on December 11, when Libya began to vomit. At first, her parents chalked it until she spoiled it. Libya spent the night with her grandmother, who is known to spoil her children with treats. “We called it a’grandma’s hangover,'” Mrs. Widders recalled.

Libya, a vibrant athletic kid, quickly bounced off, but the next day her six-year-old brother, Jackson, also fell ill. He had a high fever and was ill for days. Libya, who returned to school, visited the trampoline park and decorated cookies with her neighbors, seems to have avoided her worst.

A week and a half later, until the mother noticed her eyes. Her urine was also orange and Libya leaked to her.

The diagnosis of hepatitis was shocking. This condition has a variety of potential causes, including exposure to toxins, heavy drinking, and hepatitis B and C viruses. Often associated with intravenous drug use. Mrs. Widder was staring at her husband with her distrust. “Where did she get hepatitis?”

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

That night, Libya was admitted to the 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 ill.”

In the next few days, Libya’s condition worsened.

One of the main roles of the liver is to process toxic substances such as ammonia that are naturally produced in the body. If the organs are not functioning properly, these toxins can move to the brain and cause cognitive and behavioral changes. As Libya’s ammonia levels rose, she was frustrated and furious, screaming at her mother without provocation.

Damage to the liver, which produces proteins that help blood clot, also slowed her natural clotting response and increased her risk of bleeding problems.

Doctors gave Libyan steroids to reduce inflammation and a compound called lactulose to help wash away ammonia. She underwent blood transfusions, CT scans, ultrasonography, and liver biopsy. The Widder and his wife slept in the hospital, and their relatives took care of Jackson and his one-year-old daughter.

Libya spent part of Christmas day calming down, but woke up enough time to open some gifts, including the game Hungry Hungry Hippos. “She doesn’t remember much about Christmas, but she knows Santa has arrived,” Widder’s said.

Top of the list

Despite treatment, Libya’s coagulation problems persisted and her ammonia levels remained high. She woke up excitedly, confused and confused. She asked the same question — can she go for a walk? Where was her brother? —— Over and over again. She barely managed to get through the game of Candyland with her sorrowful grandmother. “When you look at her as we were looking at her, it gets worse rapidly in front of her. It’s like” how much more time do you have? ” Her mother remembered.

On December 28, the doctor announced the news. Libya was on the transplant list. Status 1A — Top priority.

While waiting for the match, doctors decided to start Libya with liver dialysis to remove some of the toxins from the blood. A few days after Libya’s aunt visited, I got a call. Mrs. Widder put the transplant coordinator on the speakerphone: they had a liver for Libya.

It was a complex moment for Revere’s parents, and their joy over the family of the deceased donor was relieved with sorrow.

“We were staring at death head-on,” said Mrs. Weiders.

“Yes,” said her husband. “And we knew that our joy was sacrificed—”

“Someone else’s selfless’yes’,” she continued. “The tragedy of someone else was our miracle.”

On January 1, Libya received a new liver. The next day, her doctor took her out of bed and worked to regain her strength.

On January 12, Libya was discharged. The Widder family celebrated Christmas again when they returned home, and neighbors continued to decorate her for Revere. “There was a night when everyone wore them, and we could drive around and see the lights,” Mrs. Widders said.

Find the cause

From the beginning, doctors warned Libya’s parents that they might not understand why her liver stopped functioning. In many cases of childhood hepatitis, clinicians never find the cause, Dr. Peters said.

In the case of Libya, doctors ruled out various common triggers, but blood tests revealed that one of the causes was adenovirus.

There were no signs of the virus in the liver, but adenovirus infection could “cause an abnormal immune response that attacked the liver,” Dr. Peters said.

She admitted that it was not a completely satisfactory explanation. Adenovirus usually did not cause liver damage in healthy children, and adenovirus levels in Libya were low.

The mystery did not offend Revere’s father. “I left the hospital” What do you know? She is alive, “he said. “I really don’t need to know what caused it.”

It was more difficult for Mrs. Widder to accept the unknown, especially when Libya had a liver rejection episode that was temporarily returned to the hospital. Due to her setbacks, her mother wondered if Libya had any genetic or autoimmune disorders, but her tests found no evidence of this. By spring, Revere went home forever and her parents settled with the possibility that they might never get an answer.

And in April, a friend sent Widders a text about a mysterious population of childhood hepatitis cases in the United Kingdom. Shortly thereafter, he saw an article about the Centers for Disease Control and Prevention investigating a similar cluster in Alabama. All nine children in Alabama tested positive for adenovirus.

The incident sounded eerily familiar to the Widder and his wife — and rushed back to their most difficult days. “It was a bit traumatic,” said Mrs. Widders. “And there was sadness,’Oh, that’s not just Revere.'”

recently, Over 200 potential hepatitis cases According to the CDC, it has been reported in children in the United States. Many affected children have been tested positive for adenovirus (often adenovirus type 41, which usually causes gastrointestinal symptoms).

However, the virus has not been found in all affected children, and scientists are not sure why the common childhood virus suddenly causes liver damage. They are investigating whether the virus has changed and whether other factors may have contributed to the phenomenon.

Both hypotheses remain speculative, but children may be more vulnerable due to previous coronavirus infections or, conversely, no exposure to adenovirus during the pandemic shutdown. It is also possible that adenovirus infections have always caused hepatitis in a small subset of healthy children, and scientists were aware of the relationship.

“Is it a heightened awareness?” Said Dr. William Ballistrelli, Honorary Director of the Cincinnati Children’s Center for Pediatric Liver Care. “Is it a new virus? Is it a new virus that has a synergistic effect with the old virus?” He added, “I don’t think any of these theories can be dismissed.”

The lack of an obvious cause also embarrassed my parents. In April, Ashley Tenold received an unexpected call from a school nurse informing her that her daughter appeared to have jaundice. “She just turned yellow,” said Tenold, who lives in the countryside of Wisconsin. “She had no cough or abdominal pain. It was another typical week in the country.”

Her daughter’s liver was slightly inflamed, but as in most cases, her case turned out to be milder than that of Libya. She was discharged from the hospital a few days later.

But the experience was still confusing and horrifying, Tenold said.

New purpose

In the months following the Libyan transplant, her parents encouraged friends and family to register as organ donors, who shed blood in the name of Libya. Liviah has also helped her mother sell earrings to raise money for the Hospital’s Liver Helping Hands Fund, which supports families of pediatric liver patients.

“We are stepping into this purpose we have,” said Mrs. Widder.

Libyan parents also found a delicate balance with parents who were worried that their child might come next. They want others to pay attention to the signs of liver problems (yellow skin and eyes, dark urine), but they also know that what happened to Libya is rare.

“You can’t react to all vomit. You can’t react to all colds,” Widders said. “But the signs of the liver are unmistakable.”

Libya, who is currently receiving physiotherapy, is recovering steadily, her parents said. With the exception of her one-year-old Juliana, her entire family is receiving psychotherapy to help them handle what they have experienced. Libya knows that her old liver was ill and was given a new liver that she named Teddy.

The Widders also want to create a scrapbook for Libya that accurately records what happened to her. At least as much as they and the experts could understand.

“She doesn’t remember that much, which is great,” said her father, who keeps recording Libyan liver enzyme levels in a spreadsheet. “It’s much harder for her parents,” he added. “Children are very elastic.”

The family is still acclimatizing to the new normal. This includes immunosuppressive drugs to prevent Libya from rejecting her new liver and a new focus on hygiene to protect her from other pathogens that make her now more vulnerable. It has been.

However, Libya has returned to kindergarten and football and dance. On a recent beach day at her school, she wore a bikini to show off her 8-inch scars. She calls it the “princess mark”.