Maternal care -- or harm?

It was lunchtime at Loma Linda Academy when the social workers arrived, escorted by a deputy sheriff.

They were there to collect the Udvardi children. Amid dozens of students munching sandwiches and chips, school officials found 6-year-old Esther, then Abram, 11, and Sam, 14. They got the eldest, Matthew, 16, just as he arrived at his American Lit class.

The children were hustled one by one to a white van in the parking lot, then whisked away even before their father, the school’s band teacher, knew what was happening.

Seven miles away in Redlands, the phone rang at the family’s modest tract home. Leslie Udvardi found a county social worker on the line.

The woman was blunt: Leslie had been deemed a danger to her children. They would be in the state’s care until a court decided differently.

Leslie said the social worker accused her of subjecting the kids to unnecessary and often painful medical treatments. In fact, child welfare officials believed Leslie was the one who was sick, with a syndrome known by a long and forbidding name: Munchausen by proxy.

Leslie had read about it. It was a TV crime drama disease, a mental illness in which a caregiver, usually a mother, fabricates illnesses in a child to gain attention.

Certainly her children had been stricken by an unusual number of ailments, almost from birth, but Leslie told the woman she’d done everything in her power to help, not hurt, them.

The social worker kept talking: Leslie could drop off clothes and books for the children.

Leslie barely registered the details. All she could think was: They’ve taken my kids.

Leslie hung up and dialed her husband’s cellphone.

She was “screaming in a panic,” Kirk Udvardi remembered. He was being accused too, she told him, of failing to protect the children from her.

For four days, Kirk said, no one would tell either parent where their children were.

Kirk said a social worker did offer him some unsolicited advice: “You’re going to really need to come out strongly against your wife. If you don’t come out against your wife, there’s a good chance you’re not going to see your kids again.”

Problems from the start

Though she’d given birth four times, Leslie never felt she’d had the chance to simply “enjoy a baby.”

Her first, Matthew, was besieged by illness almost from the start: rashes, respiratory infections, eye problems and difficulties absorbing food, records show. So many complaints, Leslie recalled, that his pediatrician accused her of being a bad mother. She switched doctors.

Then came Sam. He, too, was dogged by ailments. A reflux problem meant she had to feed him formula until he was 4.

In 1994, Leslie was pregnant again. She was certain that God wouldn’t give her another difficult child, she said. But Abram had to be fed through a tube in his nose. Later, he suffered seizures.

Playtime had to be juggled with doctors’ appointments and tests. There were asthma episodes, allergic reactions and scary moments when the boys stopped breathing in their sleep. There were oxygen tanks, special diets and detailed instructions to playmates’ parents.

Leslie, a small, intense woman with thick glasses and a nervous smile, wondered what was going on. Was there something in the couple’s genes that was making their kids sick? She had medical problems herself: headaches, allergies. She’d battled attention deficit disorder since college. She was sure at least one of the boys had it too.

“I tried really hard not to panic,” said Leslie, now 49. But she became “hyper-alert” to the smallest symptom, looking up each one on the Internet.

When a geneticist the couple consulted saw no pattern to the family’s health problems, Leslie said she couldn’t believe it. “I really felt in my gut that they had to be related somehow.”

But there was little time for research. Kirk, now 43, was teaching music classes at two local colleges and the academy, a Seventh-day Adventist school, while squeezing private lessons in between.

Leslie, a former high school math teacher, had to cut back on tutoring students to manage the boys’ care. Money was tight.

Then came a disconcerting surprise: Leslie was pregnant again. Part of her didn’t want to risk having another unhealthy child. But this one turned out to be a girl -- finally, after so many boys.

They named her Esther. They hoped she would be healthier, but by the time she was a toddler she was plagued by sleep apnea, chronic viral infections and a seizure disorder, according to medical and court records.

In some ways, the Udvardis were just like their friends and neighbors: committed to their hobbies and routines, devoted to their faith. The parents, who had converted to Seventh-day Adventism shortly after moving west from Indiana, had close friends in the tight-knit church community that revolves around Loma Linda University. The family attended services whenever they could.

They gathered for board games on Saturday nights. Matthew played saxophone. Sam excelled on the school’s Mock Trial team. Abram and Esther were lively grade-schoolers.

“I thought I was normal,” recalled Abram recently.

Still, Leslie said, she couldn’t stop worrying about the kids, especially Esther. More and more, the little girl had headaches and cried out in the night, complaining of pain in her legs. The doctors at Loma Linda University Medical Center couldn’t pinpoint a cause.

But they didn’t hear her cries, Leslie recalled thinking. Leslie pushed relentlessly, at times brashly, for answers.

Finally, on an MRI scan, one doctor saw a syrinx, a fluid-filled cavity, in Esther’s spinal cord. Leslie Googled “syrinx” and found that it could be caused by a congenital abnormality called a Chiari malformation, in which a small portion of brain tissue at the base of the skull bulges into the spinal canal, blocking the flow of fluid.

She began posting questions online. She discovered that Chiari could be associated with a hereditary connective-tissue disorder called Ehlers-Danlos syndrome, or EDS. Rare and potentially crippling, it is caused by defects in the genes for collagen, the structural protein in skin, organs, tendons and bones. There are several forms of the syndrome, some more damaging than others, some difficult to diagnose.

Leslie was struck by the bizarre and seemingly unconnected array of symptoms.

To Kirk, they seemed to describe the Udvardi children, reading “like a list of their problems.”

Leslie began writing to Chiari and EDS experts nationwide, sending them the kids’ medical records. To her relief, doctors wrote back: Yes, we see this in our patients.

Encouraged by the response of the Chiari Institute in New York, Leslie said she made plans to take Esther there for an evaluation. Treating the Chiari could mean risky spinal surgery, but Leslie worried that without expert intervention, her daughter might end up in a wheelchair.

Maybe her boys could be checked at the same time, Leslie recalled thinking, although the diagnostic tests -- controversial even among experts -- seemed frightening. The children would have to endure two days of “invasive surgical traction.” To check for blockages of spinal fluid characteristic of Chiari, screws would be inserted in their temples, then attached to pulleys and cables that pulled their heads upward.

Because Esther’s legs tired easily, Leslie hoped to get a prescription from Esther’s pediatrician for a special-needs stroller for the trip.

She couldn’t wait to share her news with the doctor: She might have an answer, at last, to her children’s suffering.

Suspicious behavior

At loma linda University Medical Center, the Udvardi children’s doctors were looking for answers too.

By 2005, the children had had more than 500 doctors’ appointments among them, not including sleep studies and numerous other tests. Their medical records filled thick volumes.

The number of illnesses was “alarming,” one geneticist later told detectives, adding that she had “never seen four children in the same family so sick.”

In time, the doctors were not focusing solely on the children. They were scrutinizing their mother.

Once at the hospital, when Abram threw up after being left alone briefly with his mother, doctors tested him to see if he’d been given the vomit-inducing drug Ipecac, according to medical records. Another time the boys were screened for opiates, amphetamines and other drugs that might have produced their symptoms. Nothing showed up in any of the tests, save an ingredient in an antihistamine Abram had been prescribed for allergies.

Dr. Edward Elmendorf, the children’s pediatrician, later told detectives he suspected that a vaginal discharge problem of Esther’s might have been caused by Leslie “rubbing soap suds into her privates.”

Leslie’s behavior was suspicious, the doctors told detectives. Clearly, her children had suffered from some real disorders, including asthma, seizures and reflux problems. But other symptoms she had mentioned seemed vague or overblown.

Anxious, pushy and very smart, Leslie seized on far-fetched diagnoses and demanded tests and assessments, the doctors recalled. If one doctor didn’t give her the answer she wanted, they said, she’d look for someone else. But there was never anything concrete, never an explanation for the children’s tangle of illnesses or any proof that they were fabricated, according to court records.

Then in August 2005, Leslie took Esther to Elmendorf’s office, insisting that Esther probably had Chiari and needed the special stroller to visit doctors in New York.

Elmendorf later told detectives that Esther showed no signs of pain or difficulty walking. He refused to “order the wheelchair for a healthy child.”

An argument ensued. “That is when it hit the fan,” Elmendorf told detectives in April 2006.

After Leslie left, a doctor-in-training who had been observing the visit gave a name to everyone’s suspicions, scrawling into Esther’s medical record: “suspected Munchausen by proxy syndrome.”

Elmendorf consulted a colleague from the hospital’s Children’s Assessment Center, which reviews child abuse cases for the county. This mother, he said, is seeking an unnecessary surgery for her daughter that could cripple her.

Sixteen days after Esther’s appointment, Elmendorf added a note to Esther’s chart: “Esther has been to 3 neurosurgeons and 2 neurologists. She does not have Chiari malformation . . . but has a small syrinx that is not thought to be symptomatic. . . . Unfortunately -- I believe mother is seeking care for her children that is inappropriate and unnecessary.”

That same day, he filed a child abuse complaint with the San Bernardino County Department of Children’s Services. The complaint automatically was referred to the Sheriff’s Department, which began an investigation.

Leslie, Elmendorf later told detectives, “needed to be stopped.”

‘Mom is dangerous’

In September 2005, when social worker Esmeralda Puente questioned the pediatrician, he gave a chilling assessment.

“Mom is dangerous,” Elmendorf told her, according to a report Puente later filed in court. “She is using the kids for whatever means. . . . I think that the inappropriate seeking of medical care has been going on for years.”

Dr. Clare Sheridan-Matney, the medical director for the Children’s Assessment Center whom Elmendorf already had consulted, was appointed by the county’s Department of Children’s Services to determine whether the children’s medical conditions were genuine. A forensic pediatrician, Sheridan-Matney was trained to recognize and evaluate child abuse and routinely testified as an expert witness.

About two months later, she reached a preliminary conclusion: Leslie, she told Puente, had “fabricated a long list of medical diagnoses for the children.”

That was enough for Puente and her bosses. On Dec. 7, 2005, the children were taken from their school. Five days later, a judge placed them in the state’s custody.

The case against the Munchausen mom began to build.

In interviews with social workers, doctors recounted Leslie’s “belligerent” refusal to believe their diagnoses. The teachers said the kids seemed normal, not fragile or sick. In a letter, the school psychologist described how Leslie had called in September 2005, concerned that Abram was dyslexic, when testing showed reading was his strength. Longtime school nurse Merry Herrmann told detectives she’d suspected Munchausen by proxy all along.

The mother, she said, was trying “to get attention and to be able to continue to stay home and not work,” according to the detectives’ report.

Back in school, the kids were brought in to be interviewed by Puente, one by one. “It was a little terrifying,” Matthew Udvardi recalled. “She was saying, ‘Your mom is doing stuff to make you sick.’ ”

Dr. Sarah Roddy, a pediatric neurologist at Loma Linda, told detectives she didn’t believe Esther had a Chiari malformation. The Chiari Institute, she said, was “questionable” and “will do surgery on anyone.”

Meanwhile, Sheridan-Matney made her way through the volumes of medical records. “There are some examples of genuine illness for Esther,” she wrote in her final report. “However, almost from birth, exaggerations and fabrications began.”

The children, all basically healthy, were subjected to “many unnecessary and often painful medical tests, procedures and treatments,” Sheridan-Matney wrote.

Leslie, she said, “has a compelling need to see her children in the sick role, and no amount of normal studies or normal reporting will convince her otherwise.”

“In my opinion,” Sheridan-Matney concluded, “no medical decision should be made on these children based on symptoms described by Mrs. Udvardi.”

‘Hard to trust anyone’

“I was terrified, completely terrified,” Matthew Udvardi said of the day he joined his younger siblings in the white van. Esther was in the corner, crying.

She and Abram, the two youngest, were taken to one foster home, Matthew and Sam to another.

The older boys’ foster parents spoke mostly Spanish, and no one would discuss what was going to happen to them.

“Oh, God, what if they take us away from my parents permanently?’” Matthew, now 18, recalled thinking.

As far back as Matthew could remember, he and his siblings had seemed to have more health problems than most kids. But he’d never felt there was anything wrong with his family, including his mother. His ailments -- depression, food allergies -- were real. “I can feel the things happening to me,” he said.

Now the social workers were telling him that his mother made it up.

“They were trying to get me to say that my mom wanted to cut into Esther’s spine,” said Sam Udvardi, now 16. “It was hard to trust anyone at that point.”

At home, Leslie and Kirk said, they were panicked. At one point, Kirk said, he wondered if he shouldn’t just say Leslie was guilty, then recant once they got the kids back.

The day after the children were removed from school, Kirk broke down in band class when he saw Abram’s empty chair in the second row.

Days later, at the first dependency court hearing, the judge allowed the kids to return home, on one condition: Leslie had to move out. She moved in with a friend, sleeping in a bunk bed in her family room.

She sensed suspicious looks from neighbors, even friends. “There’s nothing else that could be worse than to be accused of being a mother hurting your child,” Leslie said.

For much of the next five months, Leslie was limited to one two-hour visit with her kids each week, monitored by a social worker. She missed Abram’s first concert, Matthew’s solo at the talent show, Esther’s choir performance.

Though Matthew and Sam were teenagers, Kirk felt he could never leave the children even to run to the market, he said. “I was terrified to leave the kids by themselves, that DCS would come by.” He barely saw Leslie but said his faith in her innocence never wavered.

To preserve their options, the couple hired separate attorneys, borrowing money to pay them.

“We kept looking at the records and saying there’s nothing to this,” Kirk said. “Then each court hearing got worse.”

At one point, even Leslie’s parents thought she should find a way to settle. “They admitted they felt I could be a little aggressive,” Leslie said. Her sister and a brother revealed suspicions that the allegation might be true.

“I can be a little obsessive . . . hyper-focused,” Leslie acknowledged later. “On the surface, I look like a Munchausen’s mom. I went on the Internet and read it and saw it and said, ‘Well, that could be me.’ ”

But it wasn’t, she said.

Turning to a stranger

Through people she met on the Internet, Leslie learned of a national EDS expert whose resume ran 33 pages.

“Now I am really afraid,” she wrote in a January 2006 e-mail to Dr. Clair Francomano, an associate professor at Johns Hopkins University School of Medicine in Baltimore and director of adult genetics at the Harvey Institute for Human Genetics.

“It looks like they are going to try and prove that I have been poisoning the kids to elicit their symptom. With that comes criminal charges which will be more difficult to prove but I guess circumstantial evidence is all they need to take permanent custody of the kids.”

Leslie pleaded for help, thrusting her family’s fate into the hands of this busy stranger.

Francomano, who had never testified in a dependency court case before, was intrigued. She agreed to take this one on. The kids couldn’t fly out to see her, but she reviewed volumes of their medical records, a task that would eventually take hundreds of hours, much of it at no charge. She also agreed to examine Leslie and her brother, who exhibited many symptoms of EDS.

“I have to say, this is extremely Kafka-esque, and, of course it is very frightening,” Francomano wrote in an e-mail to Leslie on Jan. 25.

“I felt like this family’s life was at stake,” Francomano recalled later.

A judge’s dissection

On a sweltering afternoon in June 2006, the Udvardis, her parents, social worker Puente and five attorneys filed into a San Bernardino courtroom. Today, the judge would render his decision.

For 2 1/2 weeks, the couple had held hands in court as their parenting choices were scrutinized and debated. The kids didn’t attend. Kirk wasn’t allowed even to talk to them about it.

The Department of Children’s Services had dropped the Munchausen by proxy allegation, but that was more of a technicality than a victory for the couple. It relieved the agency of the obligation to prove that Leslie had purposely made her kids ill. She remained accused of falsely reporting medical conditions in search of needless treatments. Kirk still was alleged to have failed to protect the children.

Now, the Udvardis’ hopes rose and fell as Judge David Cohn spent nearly three hours dissecting the case.

He acknowledged that Leslie had a tendency “to take a seed of worry and grow it into a massive tree.”

He confessed that he found the testimony of Dr. Paolo Bolognese of the Chiari Institute frightening.

“We’re here today because everybody who has looked at this case is scared to death about what’s going to happen to Esther at the Chiari Institute in New York . . . “ Cohn said. “Screws inserted into the child’s skull, the child basically suspended with a series of weights. It sounds like something devised by . . . Tomas Torquemada of the Spanish Inquisition.”

But, he said, just because Leslie believed in a rare illness, chose an aggressive physician or even sought potentially hurtful or dangerous procedures, was that any reason to take her children away?

In the end, the judge said, the fate of the Udvardi family hung on the testimony of two experts: Sheridan-Matney, San Bernardino County’s preeminent child abuse expert, and Francomano, a distinguished East Coast geneticist and researcher.

Sheridan-Matney had spent days cataloging the occasions Leslie had made up or exaggerated illnesses for her children, painting a picture of an attention-mongering mother.

Francomano had spent days countering each assertion, pointing again and again to evidence of actual illness in the children’s medical records.

The geneticist testified that many of the children’s conditions could be attributed to a form of EDS that she called “EDS-plus,” an unusual constellation of ailments that she said Leslie and her brother also had. (Kirk did not have the disorder.)

As the judge’s analysis wound down, the Udvardis could barely stand the suspense. Would the family be ripped apart?

Then Cohn said the words they’d dreamed of: Sheridan-Matney’s opinions were “worthless.”

“Either Dr. Sheridan’s review of these records . . . was careless, or she has an agenda that caused her to disregard intentionally those records which undermine her conclusions,” Cohn said.

The Udvardis, Cohn said, were “honest, forthright and believable.” Leslie clearly “does not want to harm her children.”

Yes, she allowed terror to cloud her understanding of what doctors were telling her. And, yes, she disregarded the opinions of some well-qualified doctors in favor of others who shared her mind-set.

But in the end, he said, none of that mattered. Francomano delivered “a bona fide medical explanation for what happened with this family,” Cohn said. “She’s not paid to give some opinion to the highest bidder. This is a world-class scientist, and her opinion corroborates the testimony of Mrs. Udvardi and Mr. Udvardi.”

The evidence, he concluded, “does not support a finding that these are severely damaged children, let alone a finding that their parents caused it.”

A taint -- and no apology

At home, there was a tearful, almost giddy reunion. It was over, family members recalled thinking.

In the months that followed, they realized it wasn’t.

The judge’s ruling -- emphatic as it was -- didn’t wipe the taint from the family. It didn’t remove the sting of knowing that trusted school staff, friends and doctors had seen Leslie as a monster, family members said.

No one even told them when the criminal investigation was dropped. And no apology came from the doctors and social workers, Leslie said.

“I would feel better if the doctors would at least admit to something, that they were wrong -- just a little,” Sam Udvardi said.

The only acknowledgment from the hospital came from its attorney, in response to a packet of documents Leslie sent as part of a written complaint. At the end of a three-page letter defending the hospital on every point in dense legal prose, E. Nathan Schilt wrote: “I am deeply sorry for the ordeal you and your family have undergone.”

Hospital and social service officials, including Sheridan-Matney, declined to discuss any aspect of the case with The Times, citing confidentiality protections in medical and child abuse cases.

From her insurer, Leslie got a letter saying that Loma Linda no longer wished to treat the family “due to reports of repeated noncompliance and disruptive behavior.”

A geneticist at UC Irvine Medical Center, recommended by Francomano, is keeping watch over the children’s health. All of them have been diagnosed with “EDS-plus.” By March 2007, based on new tests less invasive than those previously used by the Chiari Institute, the children had been diagnosed with Chiari as well, Leslie said. How their health will be affected in the long term remains unknown.

Leslie still fears they are not getting all the help they need. Esther could use better braces to keep the joints in her arms from dislocating. She needs a referral to a pediatric pain clinic. Matthew is on a special diet and takes medication for his depression. Sam still suffers seizures and can’t get a driver’s license.

The three younger children continue to attend Loma Linda Academy. Kirk still teaches there. Every day, he sees colleagues who supported the couple and colleagues who did not.

Saddled with $151,000 in debt from the battle, the Udvardis wanted to sue their accusers. But attorneys told them it would be fruitless: A state law gives absolute immunity to professionals who report suspicions of child abuse, founded or not.

It’s hard to imagine forgetting about all this and resuming the life they had before the white van came. It’s hard to imagine anyone else forgetting either.

“I still feel when I walk into a room,” Leslie said, “people see me and whisper.”

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tracy.weber@latimes.com

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(BEGIN TEXT OF INFOBOX)

Disorders that are often unrecognized or misdiagnosed

Munchausen syndrome by proxy

A mental illness in which a caregiver, usually a mother, fabricates or induces illnesses in her children to gain attention, often leading to unnecessary tests and treatments. The name comes from an 18th century German baron renowned for telling tall tales about his travels. Prevalence estimates vary, though in recent years it has been alleged in child abuse cases. The most common symptoms described by the caregiver in such cases are abdominal pain, seizures, sleep apnea, fevers, infections, bleeding and lethargy.

Ehlers-Danlos syndrome

A rare constellation of inherited connective tissue disorders caused by defective collagen, the body’s structural glue. Symptoms include loose, exceptionally flexible joints, slow healing of wounds, stretchy and easily bruised skin and a tendency to bleed easily. Some patients also experience frequent, painful joint dislocations, serious eye problems and spinal curvature. The effects range from mild to crippling or even deadly. Because of its wide-ranging symptoms, it is easily missed by doctors or confused with other conditions.

Chiari malformation

A malformation, usually congenital, in which brain tissue protrudes through the bottom of the skull into the spinal canal. The tissue blocks the flow of cerebrospinal fluid and can lead to the formation of a syrinx, or cavity, within the spinal cord. It sometimes develops in patients with EDS because of the laxity of the joints between the neck and the skull. Patients may experience no symptoms or suffer from severe headaches and neck pain, sleep apnea, muscle weakness, dizziness, vertigo or impaired fine motor skills.

Source: Times reporting

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About this report

This account is based largely on interviews with the Udvardi family and on copies of confidential court records provided by the Udvardis. These include reports from social workers, police interviews, medical records and evaluations. In addition, the Udvardi family provided copies of court transcripts, medical records and correspondence not part of the court record. Dr. Clair Francomano was interviewed and provided medical records with the permission of the Udvardis.

The doctors, hospital officials, judge and social workers cited in the story would not agree to be interviewed, citing federal patient privacy laws and the confidentiality of dependency court cases.