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Fatty Liver Was a Disease of the Old. Then Kids Started Getting Sick

ReachMD Healthcare Image
03/12/2024
washingtonpost.com

EL CAJON, Calif. — When doctors told Carmen Hurtado that her 8-year-old was sick with a condition known as fatty liver disease, her first reaction was not fear. It was confusion.

Dani was a happy, active child, and other than putting on some weight the previous year, nothing appeared wrong with her. Hurtado thought of fatty liver as an illness of time and poor lifestyle choices, the province of “old people,” usually men, who drank to excess.

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While that may have been true a generation ago, something — scientists are still trying to figure out what — changed in the early 2000s. Pediatricians across the United States began reporting cases of children as young as 2 and through their teens with globs of fat cells in the liver in concentrations that should not normally exist. Some of the patients were very ill.

“It took me a while to understand what was happening, and then I was really scared,” Hurtado said.

Before the turn of the century, there were only a handful of documented cases of pediatric fatty liver disease in the medical literature. Today, millions are affected, and researchers in the journal Clinical Liver Disease estimate that 5 to 10 percent of all U.S. children have nonalcoholic fatty liver disease — making it about as common as asthma.

“It’s the worst disease you’ve never heard of,” saidSamir Softic, a pediatric gastroenterologist at Kentucky Children’s Hospital who specializes in fatty liver disease.

Dani Rivera, right, and her sister Giselle share fun at a San Diego park. They also share a diagnosis: nonalcoholic fatty liver disease. (Da'Shaunae Marisa for The Washington Post)

The rise has been as precipitous as it has been unexpected, according to a Washington Post analysis.

Data from 2017 to 2021 shows large jumps in the incidence of nonalcoholic fatty liver disease across all ages in the nation, but the steepest increase by far is in children. For children up to age 17, the rate of diagnosis more than doubled, according to insurance claim data analyzed for The Post by Trilliant Health. Some of that is an artifact of more vigilant reporting and testing as the condition became better recognized, but the trend is unmistakable.

Hospitalizations have surged, too, with more than 1 million patients — mainly adults — treated in emergency rooms or admitted in 2020, according to an analysis of cases related to nonalcoholic fatty liver disease for The Post by the federal Agency for Healthcare Research and Quality. That represented a two-thirds increase from just four years earlier.

Liver transplants have likewise grown among adolescents and young adults, with a 25 percent increase during the past decade in children 11 to 17 years old, data from the United Network for Organ Sharing shows. Transplants for young adults 18 to 34 more than doubled in that period.

The disease is seen across all racial, socioeconomic and geographic groups, but doctors report anecdotally that children of Mexican descent, some Asian subgroups and those living in poverty are disproportionately affected.

The escalation of pediatric fatty liver cases has unfolded in tandem with the presence among the young of other conditions once viewed as almost exclusively adult diseases: high blood pressure, high cholesterol, diabetes, even gallstones.

The trends reflect an environment in which more Americans are facing early death. Life expectancy in the United States has been on the decline in recent years, hitting 76.4 years in 2021, the lowest point in nearly two decades, according to government data. While the opioid epidemic and gun violence account for some of those young deaths, the seeds of many other preventable deaths are sown in childhood.

Dani gets a checkup with gastroenterologist Kimberly Newton at the UC-San Diego Altman Clinical and Translational Research Institute. (Da'Shaunae Marisa for The Washington Post)

The crisis is especially acute in swatches of the Southeast, where rates of pediatric obesity are highest. But obesity is only part of the puzzle. Scientists have been surprised to find that not all kids with obesity have fatty liver, and not all kids who have fatty liver disease struggle with weight. Paradoxically, several studies have found that a substantial number of children with the most serious cases of fatty liver disease have a low body mass index.

Research into the causes of the disease remains in its early stages, but many doctors believe that our modern lifestyle — diet, the increase in sedentary activities related to technology and environmental exposures — is to blame. One of the liver’s jobs is to filter toxins, and when something in the body is out of balance, the organ can become damaged and fail.

Some pediatric experts theorize there’s a mismatch between our genetics and the highly processed and sugary foods that have come to dominate childhood diets. Nutritional surveys show that meals eaten by kids changed radically in a generation, going from very littleultra-processed foods in the early 1980s (they hadn’t hit the market in a big way yet) to more than 67 percent in recent years. Such diets lead to hormonal changes and other stresses on our bodies.

“It creates a time bomb, and it is killing our kids,” said Barry M. Popkin, a professor of nutrition at the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill.

The wave of pediatric fatty liver disease has come on so fast that the medical community is scrambling to understand its epidemiology, risk factors, screening, diagnosis and management. Doctors have expressed alarm that no Food and Drug Administration-approved treatments exist and that some of the most promising interventions — such as a new generation of weight-loss medications — are impossibly expensive and usually not covered by health insurance for fatty liver.

As countries in Europe, Latin America and beyond have increased regulation of food additives, composition and marketing, there is increasing pressure on the United States to do the same after years of such efforts being stalled.

The FDA has proposed cracking down on use of the term “healthy” on food products because, it says, those promises are sometimes false and misleading.

In April, Sen. Richard Blumenthal (D-Conn.) and Rep. Frank Pallone Jr. (D-N.J.) introduced a food label modernization act that would update the nation’s system for the first time since 1990 to help consumers make better decisions.

The Food Industry Association, which represents manufacturers and major grocers, said it shares the desire to arm Americans with accurate and useful information to construct healthier diets but worries that labeling changes may fuel consumer confusion. Association spokeswoman Heather Garlich said the group is committed to encouraging “balance, moderation and variety in overall healthy patterns of eating.”

Dani gets lunch at the San Diego health facility. (Da'Shaunae Marisa for The Washington Post)

But consumer advocates and pediatric specialists say more-radical reform is necessary.

“Industry plays a huge role in promoting consumption and ease of access to junk foods,” said Paula Hertel, a pediatric hepatologist at Texas Children’s Hospital. “Some of the most unhealthy foods are the cheapest and easiest to gain access to.”

Hannibal Person, an assistant professor of pediatrics at the University of Washington and a pediatric gastroenterologist at Seattle Children’s Hospital, said fatty liver disease speaks to the structural racism in our food systems — including subsidies given mostly to White farmers, and grocery store “deserts” mostly in predominantly poor, minority areas: “A lot of it has to do with where you live and access to fresh food, how advertisers are targeting you, and the cultural realities of what you eat.”

Chapter 1: The culprit

From the 19th century to the 2000s, the American diet has changed dramatically. (Da'Shaunae Marisa for The Washington Post)

For most of the 300,000 years humans have existed, our bodies have prized fat. It was insurance in eras when the food supply was unpredictable and starvation was an everyday concern.

By nature, fat cells tend to cluster in certain areas — mostly in the midsection for men, more in the thighs and buttocks for women — but in recent years, scientists have been alarmed to find such cells in parts of the body not designed for fat storage. In one study, elevated levels of triglycerides, which are typically found in animal fats and vegetable oils, were identified in the brains of patients who had died of Alzheimer’s disease. Fat cells were lurking in the skeletal muscle that connects bones — and where, scientists worry, infiltration is leading to accelerated aging and frailty by decreasing strength.

Nowhere has the impact of extra fat been more worrisome than in the liver. The largest solid organ in the body, the liver is the size of a football, weighs about three pounds and is on the right side of the body, under the ribs. It performs a number of essential functions but is best known for filtering toxins. A little fat in the liver is normal, but when more than 5 percent of its cells contain fat, the organ’s ability to do its job is impeded, and pediatric specialists say some children they treat have livers with 30 to 40 percent or even as high as 60 percent fat.

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First described in the medical literature as far back as the 1830s in autopsies, fatty liver was thought to have been caused exclusively by excessive alcohol consumption. A century and a half later, in 1980, researchers led by Jurgen Ludwig at the Mayo Clinic in Rochester, Minn., were surprised to find the illness in 20 patients, mostly women, who did not drink heavily. They described a “hitherto unnamed liver disease” of “unknown cause” characterized by striking fatty changes. The condition thus became known as nonalcoholic fatty liver disease — a name that reflected its puzzling nature.

In June, recognizing the potential stigma created by including “alcohol” and “fat” in the name, scientists from 56 countries issued a call to rebrand the condition as metabolic dysfunction-associated steatotic liver disease, which puts it in a continuum of conditions such as diabetes related to the body’s ability to convert food into energy.

A 2022 study in the journal Lancet Gastroenterology & Hepatology estimated the global prevalence of nonalcoholic fatty liver disease at 32 percent, with the number higher among men (40 percent) than women (26 percent). The authors warned that those numbers were “continuing to increase at an alarming rate.” In the United States, cases are forecast to increase from 83.1 million in 2015 to 100.9 million in 2030, according to a paper published last year in Translational Gastroenterology and Hepatology. It is predicted to become the leading indication for liver transplantation in adults between 2020 and 2025.

Researchers have made progress in understanding what the disease looks like in children and in charting the demographics of who is affected.

The big question that has consumed scientists is the why. Why is this happening? Why now?

Chapter 2: The researchers

Dani was diagnosed with fatty liver disease when she was 8. Now 20, she recently had a checkup with physician Kimberly Newton. (Da'Shaunae Marisa for The Washington Post)

Jeffrey Schwimmer was a young doctor a few months into his job at Rady Children’s Hospital in San Diego when in 2000 he began to see an unusual pattern of children with enlarged, discolored and scarred livers. “The kind you’d see in an adult with chronic alcohol abuse,” he remembers thinking.

Froilan Hinojosa, then 8, was one such patient. In 2009, his mother brought him in after being reassured by pediatricians for a year that his overwhelming fatigue was normal. It was not. Another patient, Kelly Martinez, had been referred in 2012, also at age 8, after complaining of pain in her stomach and waking up nauseated and dizzy.

The Washington Post asked Frolian Hinojosa to document his daily life as a fatty liver disease patient. “Me at the gym doing rows for my back day,” the 22-year-old says. (Photos courtesy of Froilan Hinojosa)
“Me walking my Great Dane Rico (which I do every morning and afternoon).”
“That is me doing work, that's what I do every day while eating a peach (I like snacking on fruit).”
“Me preparing a guac dip.”

Daniella “Dani” Rivera arrived in 2010 at the same age as the other two, but she was more typical of the patients Schwimmer would see during the next decade — she had no symptoms whatsoever. The chatty third-grader was the oldest of three children in a family that had become homeless after the parents — her father worked in landscaping, her mother cleaned homes — lost their jobs because their employer went out of business. She was feeling fine, but her pediatrician noticed at her annual checkup that she had gained weight quickly. So the doctor decided to run bloodwork. It showed that her liver was functioning abnormally.

Many of Dani’s best memories are of the family indulging in her mom’s heavenly Mexican cooking — the enchiladas, mole, tacos. But when the family was struggling financially, she remembers often being hungry, and one of the highlights of her childhood was when a loving aunt would invite the family over to eat and, as a special treat, let Dani buy whatever she wanted at the nearest place selling snacks. It happened to be a 7-Eleven, and Dani always chose the same two items — a large Slurpee and a large bag of extra hot Cheetos. She was delighted when she was told she didn’t have to share.

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Schwimmer, a pediatric gastroenterologist who also does research at the University of California at San Diego,was struck, as he wrote in one of his first papers, by the “remarkable uniformity” in the demographics of the children presenting with the illness, not just in the United States but also in Asia and Australia. The mean age at diagnosis was somewhere around 12. Boys outnumbered girls 2 to 1. Obesity seemed to be a clear risk factor.

Meanwhile, genetic studies pinpointed variants that made some children more susceptible to severe disease, and epidemiological data showed that Hispanic and Asian children had the highest estimated prevalence, followed by White children. Black children seemed to be somewhat protected, with the lowest prevalence rates and a lower likelihood of the disease progressing to inflammation and scarring. At the same time, studies in adults showed that Black patients with a severe form of nonalcoholic fatty liver were more likely to have worse outcomes, including death.

The more Schwimmer learned, the more questions he had.

Speculation about what was causing the rise and diversity of cases was wide-ranging. Maybe it had something to do with the average ambient room temperature. Could spending more of our lives in air conditioning and heating cause us to shiver and sweat less and therefore burn fat differently? Perhaps it was toxins or chemicals.

Schwimmer’s research pivoted to diet.

From the 19th century to the 2000s, the American diet changed dramatically — with animal fats, whole dairy and fresh produce replaced by processed and ultra-processed ready-to-eat items.In a paper published in Nutritional Epidemiology in January 2022, researchers pointed out that as foods became more processed, the country experienced “a parallel but delayed rise” innoncommunicable diseases. Scientists wonder whether our obsession with cutting out fat — an ideology that took off in the 1980s and 1990s and was promoted by physicians, the government and the food industry — set off a chain reaction that led to the current precarious state of American health.

The anti-fat craze marked the ascendancy of artificial substitutes, created in industrial labs and partially digested before people eat them. Their use altered how food is dealt with in the large intestine, a few studies suggested, potentially failing to trigger bacteria that live there and are essential to health, and thus changing in potentially negative ways our microbiomes — the community of microorganisms that exist in the gut and play a role in mood, cognition and disease.

In 2013, Schwimmer came across a curious finding in a study about bottlenose dolphins. The research had come out of the U.S. Navy Marine Mammal Program, which trains animals to help in military tasks. During routine health exams, veterinarians noticed that many of the dolphins in their facility had unusually elevated liver enzymes. When they investigated, they found that more than 1 in 3 had fatty liver disease. The condition isn’t seen in dolphins in the wild.

Schwimmer contacted Navy scientist Stephanie Venn-Watson. He wondered what was different about the diets of the Navyanimals that might have affected their health. A collaboration zeroed in on a key finding by Venn-Watson, who now works in private industry: The sickest dolphins had lower levels of a fatty acid known as C15:0, or pentadecanoic acid. Found in certain fish and plants, as well as milk and butter, it is believed to improve immune function and strengthen heart health. Some experts hail the substance as even having anti-aging properties.

The Navy dolphins had been fed a diet of 75 percent capelin, a small slender fish mostly caught in Arctic waters, along with squid, herring and mackerel. Capelin and squid lack C15:0. Dolphins living in the wild subsist on a larger variety of fish, including some with higher concentrations of C15:0, especially mullet and pinfish.

In a study of 237 children, Schwimmer and his co-authors found that those with higher C15:0 levels had less fat in their livers.

About 120 miles north in Los Angeles, researcher Michael Goran was also focusing on the role of diet in nonalcoholic fatty liver disease.

Goran started his career in 1999 investigating health disparities in the Latino community and began focusing on an important gene mutation found in Hispanic children. He and his collaborators showed that having the variant along with high sugar consumption conspired to produce high levels of fat in the liver — a finding that Goran, now program director for nutrition and obesity at Children’s Hospital Los Angeles and a professor of pediatrics at the University of Southern California, believes is a key piece in understanding fatty liver disease. Sugar, Goran contends, can be as damaging to the liver as alcohol: Excess glucose in the blood is transformed into fat cells, and those fat cells gradually replace liver cells, leading to disease.

There’s growing evidence, in human and animal research, that the dangers may begin in the womb.

In studies, maternal obesity and high consumption of diet soda or junk food have been associated with development of fatty liver in offspring. Goran and other pediatric specialists theorize that artificial sugars result in “fetal programming” — the idea that nutrition, stress and other factors during pregnancy can impact a child into adulthood, including taste buds that crave sugar and a metabolism that favors fat storage.

“For a long time, we were able to handle it. But for whatever reason, we are not anymore,” Goran said.

One specific source of alarm for Goran: changes in infant formula.

For the past few years, the industry has been marketing a new type of formula that uses a sweetening agent different from the natural lactose found in cow’s milk. It is advertised as being for sensitive babies with stomach irritation because they can’t digest milk sugar. The substitute sweetener — corn syrup solids — is not the same as high-fructose corn syrup, which is ubiquitous in cereals and baked goods and has been targeted by some scientists as complicit in the obesity epidemic.

But recent research suggests important differences between natural lactose formula and formula with corn syrup solids. Goran and his colleagues found that infants fed the latter developed a “disrupted pattern of eating behavior” that included being fussier about food and enjoying it less. One large study, published last year in the American Journal of Clinical Nutrition, involved more than 15,000 recipients of nutrition assistance from the federal program WIC — the Special Supplemental Nutrition Program for Women, Infants and Children — which serves about 40 percent of U.S. infants. Researchers found that the formula with corn syrup solids significantly increased the risk of obesity — and, by extension, the risk of fatty liver disease — by age 4, and that infants who consumed the most formula had the highest risk.

Goran said the formulas with non-lactose carbohydrates are sweeter than lactose and metabolize differently — creating risk, especially when they are not medically necessary for many consuming those formulas.

Public health advocacy groups and physician organizations have mobilized against the formulas with corn syrup solids, as well as similarly sweetened “transition” formulas, marketed for children 9 to 24 months old, and “toddler milk,” for children up to 36 months. All cost up to four times as much as unsweetened and unflavored cow’s milk.

Eva Greenthal, a senior policy scientist at the Center for Science in the Public Interest, a nonprofit that advocates for healthier food systems, said toddler formulas are “a product category invented by the formula industry in order to expand their consumer base.”

“The labeling and marketing are really misleading. It creates the impression these products are healthy,” she said, whereas “water and plain milk are the best beverages.”

The Infant Nutrition Council of America, the industry group representing formulamakers, said in a statement that its member companies “select infant formula ingredients for their ability to meet nutritional targets and assure product quality.” The organization noted that carbohydrates provide an important source of energy and that “corn syrup solids are used to maintain a carbohydrate level similar to human milk.”

“Corn syrup solids have been shown in clinical studies and many years of consumer use to be safe, and support normal growth and development in infants,” the trade group said.

For Goran and Schwimmer, milk emerged as an important clue to solving the mystery of fatty liver disease — and preventing it.

Studies have shown that milk consumption is associated with a lower likelihood of nonalcoholic fatty liver disease.

But no one knows for sure whether protection comes from something in milk, such as C15:0; whether harm comes from whatever we’ve replaced milk with in our diets, such as artificially sweetened milk or sugary drinks; or whether another undiscovered variable is at play.

Chapter 3: The doctor

Samir Softic, head of the University of Kentucky’s pediatric fatty liver clinic, consults with a patient May 3 in Lexington. (Drea Cornejo/The Washington Post)

Samir Softic’s schedule was jampacked on this spring day. The head of the University of Kentucky’s pediatric fatty liver clinic — one of a few dozen that have popped up around the country in recent years — Softic was often fully booked two to six months in advance. The hospital used to bring a multidisciplinary team together twice a month to focus on children with fatty liver disease, but demand was so high that this year the clinic days increased to 18 times a month.

On that recent weekday in Lexington, Softic was scheduled to see a 14-year-old girl who was a longtime patient. And siblings, ages 10 and 13, who had both failed liver tests.

In previewing recent lab tests, he was pleased to see he had good news for the 14-year-old, Sydney Moore, whose liver function tests had normalized after she cut outsugary drinks.

“It really blew my mind,” Sydney said at the appointment. “Before, it was discouraging. I was doing all these things and not improving. That it actually made a difference made me feel really good.”

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The rest of Softic’s cases were more complicated.

Based on lab tests and medical histories, the conditions of the 10- and 13-year-old siblings appeared similar. They were both overweight and had abnormal liver function tests based on bloodwork. But when Softic took a look at their livers with a special ultrasound machine designed to estimate inflammation and scarring, the elder child’s liver showed significant injury. His brother, on the other hand, had a perfectly clean-looking liver.

Was it genetics? Softic wondered. Age? Could the scarring come on that quickly? As he turned into the next exam room, Softic filed the case away in his mind to ponder later.

Beyond urging diet changes and exercise, and monitoring progress, there’s little in a doctor’s arsenal to treat nonalcoholic fatty liver disease.

Money from the National Institutes of Health, venture capital and private donations have flowed into fatty liver disease research the past few years, but so far no treatment appears imminent.

Images of liver tissue from a microscope show what happens when fat accumulates in liver cells. Panel A shows a healthy liver. Panel B shows a liver with significantly more fat. Panel C shows scarring that results from letting fatty liver disease go unaddressed. (Cynthia Behling and Jeffrey Schwimmer/University of California, San Diego)

Supplements of sodium butyrate, a substance found in milk and butter that is used to treat gastrointestinal issues, showed promise but didn’t pan out. A trial involving a blood pressure drug believed to have antifibrotic effects was stopped early after the medication proved no more effective than a placebo. Another promising drug had worrisome cardiovascular side effects. Vitamin E, an antioxidant, remains on the table, with one early study showing improvement in some children with severe disease, but researchers say more work is needed.

For Softic, the fatty liver crisis is as much about policy as science. He has collected a stack of letters from insurers refusing to cover some patients’ treatment with a new generation of weight-loss drugs known as semaglutides, sold under brand names including Ozempic and Wegovy.

The companies say the medications are not yet proved to help with fatty liver.

While Softic believes that fundamental changes in how we eat and exercise are needed in the long term, he said lives could be saved in the short term if these drugs were widely and cheaply available. He’s lobbying state and federal regulators to help pay for the treatments — which can cost upward of $1,300 a month — for patients younger than 18, who arguably have the most to gain because they have more of their lives ahead of them.

Liver transplants in children diagnosed with fatty liver disease remain rare, but Softic recently referred a 6-year-old for a transplant evaluation. There has been a clear rise in transplants for fatty liver in people in their 20s and 30s, meaning if he can’t help his pediatric patients now, they may soon face a transplant.

“It goes unnoticed and unrecognized, and over time it catches up. For a good number of these young transplant patients, the disease process started in childhood,” he said.

“On so many levels,” Softic added, “we are not prepared to deal with this disease in children.”

Chapter 4: The boy with pain

The first sign of the disease in Levi Salomon was a stomachache. He eliminated some traditional Filipino food from his diet. On this day in July, he helps prepare tacos. (Da'Shaunae Marisa for The Washington Post)

Living with fatty liver disease is an exercise in imagination. Typically, there are no outward signs, no pain to signal something is wrong.

Levi Salomon’s case is unusual because he felt it.

Levi had always been a dramatic kid: bubbly and expressive about everything on his mind, without a filter. So when the 10-year-old came home early one day complaining of a tummy ache, his parents weren’t terribly worried. He had been running around with neighborhood kids in the alleyways next to their San Diego home, and it wasn’t unusual for him to come home before his siblings because he tired easily.

But when that ache turned into screaming pain a few hours later, his father carried him into the emergency room. Doctors feared it was appendicitis or an infection. It was more than 24 hours later that the diagnosis arrived: fatty liver disease. It was surprising because he was quite slim, as was his entire family. Neither his parents — dad is a software engineer, mom a preschool teacher — nor his two younger siblings have fatty liver.

Levi plays dodgeball during camp in San Diego. (Da'Shaunae Marisa for The Washington Post)
Soccer and parkour didn't work out when Levi was told to take up a sport. He tried swimming. He loves it. (Da'Shaunae Marisa for The Washington Post)
When Levi was diagnosed, he asked: “Am I going to die?” Today, his liver function is almost back to normal. (Da'Shaunae Marisa for The Washington Post)

His parents, Stephanie and Joseph Salomon, can’t remember the exact words doctors used to describe their son’s condition, but the image they conveyedwas unforgettable.

“They said it was like fat was twisted, a fatty blanket in the liver, which was causing him pain,” Stephanie said.

When they saw a liver specialist, Levi’s first question was direct: “Am I going to die?”

“He told me it’s like a video game when it’s not an instant death like ‘game over.’ It’s more like your health levels get lower and lower, but there are ways to make them go higher, too,” recalled Levi, now 12 and a seventh-grader.

For Levi, that meant a sport. His parents first cajoled him to try soccer (he hated it) and then parkour (he broke his arm in the first few weeks and that was that). It was swim team that stuck. A 2023 study in the American Journal of Gastroenterology found that a small “dose” of exercise, just 150 minutes a week, consisting of moderate to intense aerobic activity can significantly reduce liver fat — even if a person does not lose any weight. Research has shown that exercise can reduce the delivery of free fatty acids and glucose — the raw materials for fat — to the liver and that it affects other metabolic pathways in a way that protects liver cells.

Levi races for a water refill before the next dodgeball game. (Da'Shaunae Marisa for The Washington Post)

Levi also had to cut out some traditional Filipino foods like lechon and lumpia that are a staple at meals with his grandparents and extended family but are high in fat. In the beginning, he sometimes cheated.

“I would sometimes eat something bad, and it’d hurt and I wouldn’t tell them,” Levi confessed.

“I really wanted to be a normal child then. But, no, back to reality: I’m not a normal child. I’m a kid with a disease, and that’s okay.”

Levi’s latest liver function tests,in August, showed levels had returned to a healthy range for the first time since his ER visit.

Chapter 5: The football player

A doctor ordered a biopsy of Jonathan Berumen Jr.'s liver, and that's when the teen knew his illness was serious. He joined the high school football team in Houston and shed 50 pounds. (Nitashia Johnson for The Washington Post)

Jonathan Berumen Jr.’s liver tests at age 11 showed that his liver was already quite ill. He was 5-foot-5 and 184 pounds, so his body mass index — or BMI — was nearly 31, pegging him as obese. His doctor ran tests as a precaution and found the liver enzyme ALT at a level of 424. A healthy reading is less than 100. Jonathan, quiet and reserved, did not take the diagnosis seriously.

His mother, Amanda Perea, overhauled the family’s diet toward healthier foods and smaller portions. But both parents were first responders working crazy hours during the first nightmarish months of the coronavirus pandemic, leaving the kids to forage for whatever was available — sometimes canned foods, she said, or “popping things in the microwave.” By age 13, Jonathan had gained nearly 100 pounds, hitting 280. And by 14, he had topped out at 304.

“I felt myself being lazier and lazier and heavier, and sometimes I think I could feel a little pain in my liver, but I tried not to think about it,” he said.

By last year, signs had converged to make the Houston teen realize he needed to fix things.

After a family jaunt, Jonathan opted for grilled chicken at lunch. (Nitashia Johnson for The Washington Post)

The first was when the doctor ordered a biopsy. “That was a turning point with him and even me,” Perea said. “I thought, ‘Gosh I don’t want him to need a liver transplant.’”

About the same time, he ran into a cousin who had lost a lot of weight. Jonathan, by then a junior in high school, said to himself, “Man, he looks great.” The cousin encouraged him, saying he could do it, too. Then a kid walking by asked Jonathan how big he was, told him he should join the football team and passed on the coach’s contact information.

Soon, Jonathan was working out with the JV team. The first day, he was so out of breath he felt like passing out and came home dejected. “My mom was pushing: ‘You’re not giving up on this. You’re doing it right.’ She would always tell me: ‘I can’t want this for you. You’ve got to want it for yourself,’” he remembered. At the end of the year, after losing more than 50 pounds and becoming so strong he could bench 200 pounds, he was offered a spot on the varsity team.

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Now 17 and a senior and 6-foot-4 and 242 pounds,he was excited that at his most recent appointment at Texas Children’s Hospital in June, his liver enzymes were almost back to normal. His efforts have inspired his entire family.

On a searingly hot summer morning in Houston, Jonathan and his mom were leading his four younger siblings — ages 14, 7, 2, and 3 months — around like ducklings on a circular path at a park for several hours.

Jonathan and his family take a walk on a Sunday fun day, despite the sweltering July heat in Houston. (Nitashia Johnson for The Washington Post)
Jonathan and his sister Aalani Berumen play at a Houston park. (Nitashia Johnson for The Washington Post)
Jonathan and his mother, Amanda Perea, preside over the four younger siblings at the park. (Nitashia Johnson for The Washington Post)

It was Sunday fun day, a concept Perea had come up with to get the whole family active. The walk was always mandatory, but sometimes they would add in bowling or swimming or something else physical that Perea said could help the kids “be active without even realizing it.”The schedule was always the same: Exercise first, then family lunch. Occasionally, they splurged on snow cones, but Perea has been emphasizing that sweets are treats and not something to be consumed regularly. Later, at lunch, Jonathan scanned the menu of the Italian place his sister had chosen and resisted the temptation to get anything fried or with butter, and went with grilled chicken.

Jonathan said that he still has a way to go before becoming as healthy as he’d like, and that one of the main things he has learned is, “You are not alone, and you can get through this and just not give up.”

Chapter 6: The family stricken

Dani, who is being examined by physician Kimberly Newton, was the first in her family to be diagnosed with liver disease. (Da'Shaunae Marisa for The Washington Post)

Dani was the first in her family to have fatty liver. Her mother and father, who grew up in Mexico and moved to California as adults, got checked and were fine. Dani was surprised a few years later when two younger siblings — her sister Giselle and brother Manny — were also diagnosed with the condition.

Their mother, Hurtado, had begun cooking special low-fat, low-salt, low-sugar, low-calorie meals for Dani as soon as she was diagnosed. That did not go so well.

“I was 8, and I didn’t understand. I was eating salads with broccoli, and I wanted pizza and hamburgers like everyone else. It was a battle for the ages,” Dani remembered.

Hurtado’s next step was to banish fast food and junk food for everyone. That still wasn’t enough. Dani’s liver numbers bounced up and down as the family, who had settled into a new home near their old one, struggled to figure out what changes would stick. Buying healthy items — fresh fruit and vegetables and meat — was much pricier and time-consuming than picking up packaged food. The family eventually found a store that had the foods they liked and could afford, but it was 17 miles away.

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Dani and Giselle, just two years apart, vowed to work together to combat the disease. Most of the time, it was a good thing, like when they reminded each other of the consequences of what they consumed. When high school friends would have parties, they backed each other up in declining alcohol. They memorized a stock response, sometimes proclaimed in unison: “No, we can’t. Because we’ll die.” They joked that they were always the designated driver.

But the freedom of the teen years wasdifficult in other respects, and Dani said that sometimes, if one of them indulged in forbidden foods, the other would often succumb as well.

“When we were younger, we started making a lot of changes, but as we got older, we started going to more fast food, and the liver numbers really increased,” Dani said.

Despite all the changes she and her family had made, Dani — who’d had no symptoms — said the disease never seemed quite real to her until one day in 2021 when she was playing with her younger sisters and they jumped on top of her in a tickle fight. One of their elbows jabbed her liver area. A horrible pain shot out. Afterward, she noticed hardness in the area.

When doctors checked her blood, they found that her liver function numbers had soared and brought her in for an emergency MRI and biopsy. The MRI seemed to confirm everyone’s worst fears: a three-millimeter mass on the edge of her liver that looked like cancer. Fat in the liver can lead to inflammation and scarring that escalates the risk for cancer.

Dani was 18. Hurtado retreated to her church and turned to God for help. “She’s in a group of like a thousand people, and they all were praying for my sister,” Giselle said.

Dani, right, and her sister Giselle Rivera hang out at a San Diego park on July 20. (Da'Shaunae Marisa for The Washington Post)

Then, something unexpected happened. Dani went into the hospital for a biopsy and to discuss next steps — liver cancer is tricky to treat but can involve carving out part of the liver, a transplant, targeted chemotherapy or radiation. To everyone’s shock, the mass was gone.

“The doctors told me it never just disappears. But it did,” Dani said.

Now 20, Dani said the incident helped her understand the precarious nature of her condition. Since then, Dani, now in college and studying audio production, has stabilized her liver by cooking healthy food, walking more and taking up hip-hop dance. For Giselle, now 19, and Manny, 15, their liver conditions are better, too. Giselle is studying business in college and spent the past school year working part time in an after-school sports program. Manny has been working out regularly and lifting weights.

But Hurtado still has her two younger daughters to worry about. Her 8-year-old was diagnosed with obesity this year.

About this story

Reporting by Ariana Eunjung Cha. Additional reporting by Dan Keating. Photos by Da’Shaunae Marisa and Nitashia Johnson. Video by Drea Cornejo. Motion graphics by Brian Monroe.

Credits

Design and development by Stephanie Hays and Agnes Lee. Design editing by Christian Font. Photo editing by Sandra M. Stevenson. Graphics editing by Emily M. Eng. Video editing by Jayne Orenstein.

Editing by Stephen Smith and Wendy Galietta. Additional editing by Frances Moody and Martha Murdock. Additional support by Matt Clough, Kyley Schultz, Brandon Carter, Jordan Melendrez and Claudia Hernández.

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Schedule20 May 2024