Just a week - and a healthy child was dying: the story of a 2-year-old girl who fell ill with new hepatitis

Hepatitis of unknown origin is spreading throughout the United States of America and around the world. It affects children, and no one can find the cause of its occurrence. In the US, five children have already died, and 15 required a liver transplant. Worldwide, including the US, 11 deaths have been recorded, and 11 children have received liver transplants in the UK. Writes about it CNN.

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Most children are small - under the age of 5 years. Many did not have obvious health problems until signs of liver damage appeared: they lost their appetite. Their skin and eyes began to turn yellow, a symptom called jaundice. Some had dark urine and cloudy gray stools.

On the day two-year-old Bailyn Schwab was taken to surgery for a liver transplant, her skin was orange and she was delirious.

It seemed out of nowhere that Beilin's liver was so damaged that it could no longer clear ammonia from her blood.

Within a week, Bailyn traded from outdoor activities on her family's farm in Aberdeen, South Dakota, playing games with her sister, and watching the children's TV show Blippy, to a room in the pediatric intensive care unit at M Health Fairview Masonic Children's Hospital in Minneapolis, Minnesota, where doctors checked her blood 4-5 times a day and watched to see if her liver could recover. But this never happened.

“The daughter withered, began to shake, it was difficult for her to sit, she could not hold her head. Watching a child go through this was impossible,” said Kelsey Schwab, the girl’s mother.

"This is very unusual"

The liver performs a number of important functions. It controls blood clotting factors, promotes the body's immune response, and filters out ammonia, which is produced when bacteria in the gut break down protein. When the liver is working properly, ammonia is converted to urea and flushed out of the body in the form of urine.

Normal blood ammonia levels are between 25 and 40 units, says Dr. Srinath Chinnakotla, surgical director of the liver transplant program at M Health Fairview Masonic Children's Hospital.

“Anything above 100 is capable of causing symptoms,” he explained. - Then the brain begins to swell, and then the patient falls into a coma. And if you do not transplant his liver, brain damage is likely, or, even worse, the person may die.

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Beilin's ammonia level reached 109. At such a high reading, the kidneys shut down and the patient falls into a coma. People waiting for a liver transplant may become so sick that they cannot endure the procedure.

Chinnakotla, a world-renowned surgeon and one of several dozen pediatric liver transplant specialists in the United States, put Beilin on a transplant waiting list.

Children automatically receive the highest priority, status 1A, reserved for those with hours or days to live.

On average, he can perform this operation on 10 children per year. Most of them need a new liver because they were born with autoimmune diseases or birth defects. It is possible that someone may need a new liver due to sudden liver failure.

“And this year,” he remarked, “we have already seen two children with liver failure and transplanted two livers. It's very unusual for us."

medical mystery

Doctors are not sure what causes these cases of hepatitis.

Dr. Jay Butler, associate director for infectious diseases at the Centers for Disease Control and Prevention (CDC), said the agency is exploring all options.

Even before this outbreak, such cases of sudden liver failure often puzzled doctors.

"I've seen a lot of kids when, with all our efforts, we never found the reason why their livers were failing," said Dr. Beth Thelen, a pediatric infectious disease specialist at the University of Minnesota who treated Beilin. “Some recovered, others went for transplants.”

“In my opinion, what has attracted people's attention is that this is happening more and more often. In addition, there seems to be an association with adenovirus - not every child, but there is a higher percentage of cases associated with adenovirus, Thielen said.

More than half of the children in the CDC study, including Beilin, tested positive for adenovirus41, a type of virus that commonly causes stomach upset and cold symptoms. It has never before been associated with liver failure in healthy children.

Doctors are not sure how this virus can be involved in the disease. It's not clear if this could be direct damage to the liver or triggering an unusual immune response that causes the body to attack its own tissues. Another possibility is that the adenovirus has an accomplice, a cofactor that can be genetic, environmental, or even infectious, that in tandem leads to such consequences.

Because these cases occur during a pandemic, researchers are also looking for any link to the virus that causes COVID-19. Some of the children in the study, including Beilin, have a history of COVID-19 infection, while others do not. Investigators say it's too early to tell if this is a factor.

Beilin tested positive for adenovirus in her blood, but not in her liver tissue. Doctors noticed this pattern in other children as well. In Bailin's case, doctors say her liver may have been so damaged by the time they tested her that they couldn't find the virus. Doctors sent tissue samples to the CDC for more specialized testing.

The adenovirus infection put Beilin's doctors in a difficult position. Typically, adenovirus infections are relatively mild, and the association with liver failure in these children is still unclear.

What if it really is an adenovirus?

Organ transplant patients must suppress immune function with powerful drugs to keep their bodies from rejecting the new organ.

Medicines can weaken immune function, allowing a smoldering infection to flare up again and spiral out of control.

If an adenovirus destroyed one healthy liver, could it attack another?

Adenovirus can be cured, but the drug that will need to be used - cidofovir - is toxic to the kidneys. This is a big risk.

Is it worth using a powerful antiviral agent for a medically weakened child?

The doctors decided to try, but closely monitor Beilin. They didn't have time to wait for the infection to pass. Her liver was failing too quickly.

Hidden disease

On Friday, April 22, Bailyn woke up covered in itchy, red sores. Her mom had seen it before - hives.

“She has a pretty long list of allergies,” Schwab Sr. said.

The family already had their own allergist, so they took the girl to the doctor, who gave her an injection of epinephrine and sent her to the local emergency room for observation.

The next day, the mother thought she noticed a slight yellowish tinge in the whites of Bailyn's eyes, but she attributed this to the effect of the medicine.

The next day, she thought that her daughter's eyes had become more yellow, and sent a photo to her mother. Later, her mother-in-law also said that Bailin's eyes looked yellow.

“She was still acting normal. She seemed like a perfectly healthy child. Her skin wasn't yellow, just her eyes," Kelsey Schwab said.

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The doctor took the blood and called them the same day with the terrible news: “You have to get to the city now. You don't have time to wait."

They didn't even have five hours to get to Minneapolis. Schwab rushed from work to the hospital, and the family was taken to the city by helicopter.

Just the day before, Schwab had been talking to her mother, a laboratory assistant, about mysterious cases of hepatitis being investigated in children. She never imagined that Bailyn could become one of them.

Schwab and her husband, whose name is not mentioned in this story, also have a 4-year-old daughter, Kennedy. They have a farm in Aberdeen, South Dakota where they grow hay and raise sheep.

In December, her youngest daughter Laramie died of sudden infant death syndrome just 12 days before her first birthday.

Then the tragedy worsened.

A few weeks after losing Laramie, Kelsey Schwab went to the doctor with abdominal pain. She thought it was the stress of grief, but it was her appendix. While Kelsey was recovering from surgery, the entire family contracted COVID-19. Then two of her husband's grandparents died within a few weeks of each other.

“Over the past five months, I have cried so much that I probably have no tears left,” she explained.

saving gift

While bioengineers have created machines that can temporarily take over the work of the heart, lungs, and even the kidneys, there is no device or procedure that can replace the liver. When this fails, patients need a transplant.

"What's interesting about the liver is that it's a very humble organ," said Dr. Heli Bhatt, pediatric gastroenterologist at M Health Fairview Masonic Medical Center, who treats Beilin.

It does its job without much fuss until it just stops functioning. Bhatt says that sometimes a person loses a lot of liver tissue and doesn't know until it's too late.

When Beilin was admitted to the hospital, the doctors took a liver biopsy to see the damage from the inside. They found something called progenitor cells, indicating that the liver is trying to repair itself. They wanted to buy some time to see if the organ could recover.

“Children who come in with these illnesses very often get better within two to three days, and then feel good and do not require a liver transplant,” the doctor explained.

Medics took her blood every four hours around the clock and monitored for any changes in liver enzymes, blood clotting factors, ammonia levels.

But the numbers have not improved. The doctors then decided to put Bailyn on the transplant list and test her parents to see if they could be living donors.

Beilin was at the top of the transplant list for three days when a liver transplant proposal came in from a 16-year-old Texas teenager. The hospital sent a team, including a surgeon, to Texas. They removed the organ, turning one family's grief into another's hope.

Liver transplant

Dr. Srinath Chinnakotla's team meticulously prepared the liver, removing its internal structures and making it small enough to fit in a two-year-old's body and still work. Then everyone rushed back to Minnesota.

A transplant is a long and painstaking operation, even under the best of circumstances.

“You need to do everything slowly and carefully, at least that’s my opinion,” Chinnakotla said.

When he explains the liver transplant procedure to patients, he tells them that it is like connecting a washing machine - three hoses are connected to it: one for cold water, one for hot, and a hose for draining the liquid.

The hot water hose is the hepatic artery that supplies blood to the liver and pancreas. He compares a tube with cold water to a portal vein that drains blood from the intestines. The drain hose is a large vein called the inferior vena cava that carries filtered blood back to the heart where it can be oxygenated.

He must clamp these vessels to stop the flow of blood, remove the old liver, replace it with a donor one, reattach the blood vessels, and finally, in a moment that always leaves him breathless, remove the clamps. It is at this moment that he will know if the transplant procedure was successful.

When Bailin's operation began, it became clear that her liver was severely damaged. One side was raised and swollen, and there were dark areas of dead tissue. Under a microscope, doctors saw that most of the tissue was destroyed. The normal liver is spongy; Bailyn's was stiff and rubbery, another sign of illness.

There was also a surprise. Instead of a single vessel supplying the liver with blood, there were two, each about half its normal size.

When he tried to attach each of these smaller vessels to a new liver, it didn't work.

“There was not enough flow,” the doctor explained. I had to use blood vessels taken from a donor to create a special graft or bridge between the aorta and the liver.

“When I did it, everything looked good,” he said.

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Even the reduced liver was still too big for Beileen's tiny body, so Cinnacotla left the incision open, covered with mesh for a day or two so that the care team could more easily check the graft and drain the wound.

The operation lasted from 8:00 to 16:30 on 5 May.

“She woke up after the operation, and was no longer yellow,” the girl’s mother was delighted.

But Beilin has a long rehabilitation ahead of her. Kelsey said she would remain in the hospital for at least another two months. After that, she will be monitored frequently until her body and new liver get used to each other.

Long road to recovery

Bailyn has come to her senses and has already begun her long road to recovery.

The family is still suffering because their once-healthy and restless two-year-old needed a liver transplant altogether.

Kelsey hopes that by telling her story, she will help other families avoid the same fate.

“I really want to inform everyone because I don’t want the other parent to be in this situation,” she explained. - It's horrible. And few families can handle the strain this places on them emotionally, physically, mentally, financially.”

Schwab Sr. wants people to pay attention to any symptoms, such as yellowing of the skin or eyes, dark urine, cloudy-gray stools, fatigue, fever, nausea, vomiting or loss of appetite, and take immediate action if they occur.

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