Rare Hib disease increases in Minnesota

Is the anti-vaccine movement to blame?

As the ultrasound tech spread the cool gel over her swollen belly, Brendalee Flint held her breath. Would it be another boy? Or would she finally get the daughter she'd always wanted? She'd be happy either way, she reminded herself for the umpteenth time.

Flint peered at the strange white shape on the black monitor. Even after three kids, the image still amazed her—watching the heartbeat was so cool. The ultrasound tech pointed out the lungs, the tiny hands, the little brain. The tech waited patiently. There! Now she could see. It was a girl.

Flint squealed. She wanted to go out and buy everything girly and sweet. To prepare for the baby's homecoming, Flint bought a purple dress and a matching headband and handbag.

Julieanna Metcalf
courtesy of Brendalee Flint
Julieanna Metcalf
Brendalee Flint's daughter, Julieanna Metcalf, contracted a rare, life-threatening infectious disease
Erin Carlyle
Brendalee Flint's daughter, Julieanna Metcalf, contracted a rare, life-threatening infectious disease
Dr. Mayer Eisenstein is one of the few medical doctors in the nation who supports the idea that vaccines may cause more harm than good
Larry Engelheart
Dr. Mayer Eisenstein is one of the few medical doctors in the nation who supports the idea that vaccines may cause more harm than good
Dr. Paul Offit, the nation's most prominent vaccine advocate, has received death threats from parents who believe vaccines cause autism
Ed Cunicelli
Dr. Paul Offit, the nation's most prominent vaccine advocate, has received death threats from parents who believe vaccines cause autism

Julieanna rushed into the world in October 2006, and came home three days old and already owning a purse. Her parents beamed, her aunties doted, her grandfathers cooed. She was the 15th grandchild to join the Flint family—but she was only the second girl.

Julieanna grew fast. Strong and chubby, she was a bundle of delight capped with dark hair and wide blue eyes. Her big brothers—Nicky, Alex, and Chris—pampered and adored her. "Julie," "Juju," "Jujubeek," "Jujubear," the family called her.

When Julieanna was 15 months old, her brother Chris called their mother at work because the baby was throwing up. Flint rushed from her job at Applebee's in Delano to her home in sleepy Watertown, a village set along the gentle Crow River.

By the time Flint arrived home, the situation had improved. The baby was running a slight fever but wasn't vomiting. A product of a family that believed in letting nature toughen the constitution, Flint gave the baby Tylenol and put her to bed.

The next day, Julieanna woke up puking, and her temperature began to rise. Flint called the office of Heidi Wuerger, her family doctor.

"It sounds like the flu," the nurse said. "Give her Tylenol."

Flint complied and kept a careful watch on Julieanna all day, feeding her liquids to flush out the illness, cooling her body with a wet washcloth.

The following day, Flint undid the baby's diaper and caught a whiff of something unusually pungent. Julieanna's urine was the color of orange juice, and its odor reminded Flint of the ammonia smell of the nursing home where she worked as an aide. As the day wore on, Julieanna refused to eat or drink.

Early the next morning, Flint awoke with a start: Julieanna was screaming—a shrill, sharp wail. Flint held Julie close, and the baby relaxed and dropped immediately to sleep. Flint shifted the little girl away from her body, and Julieanna awoke and screamed again. Flint pulled her close and the baby instantly fell back to sleep. Flint held Julieanna for hours. When the baby's temperature soared to 104 degrees, Flint called the doctor and made an appointment.

She put Julieanna in a bath to cool her. The little girl slumped against the back of the tub, as if she'd forgotten how to sit up on her own. Flint ran cold water over Julie's hair. The little girl held her head ramrod straight and her neck stiff. Her blue eyes veered left to meet Flint's, and the mother read an expression of terror in her baby's eyes. Flint pulled her daughter out of the tub, toweled her off, and rushed to the emergency room at Ridgeview Medical Center in Waconia.

The doctors admitted Julieanna for severe dehydration. They administered an IV, gave her a battery of tests to rule out pneumonia and bacterial infections, and kept her overnight. The physicians prodded and poked, but Julieanna hardly whimpered.

Flint stayed up all night, lying beside her baby on the hospital bed.

When Dr. Wuerger checked in the next morning, she knew that something was terribly wrong—she had never seen Julieanna so groggy and unresponsive. Wuerger called for a spinal tap.

The E.R. doc pierced Julieanna's spine with a long needle. The baby was so out of it that she could barely muster a soft moan in response. Flint had never seen her little girl so lethargic, and the sight of it scared her. She cried as the doctor withdrew the spinal fluid: a thick, yellow smear of pus.

"Brendalee, it doesn't look good," he said. "It's supposed to come out clear."

Julieanna's white blood cell count was 145,000—thousands of times higher than normal.

The doctor said something about meningitis and Children's Hospital in Minneapolis.

Brendalee felt confused.

"Your daughter is seriously ill," Wuerger told Flint. "We need to transport her to Children's—now!"

   

FLINT CALLED HER SISTER, and together they followed in Flint's car closely behind the ambulance carrying Julieanna to Minneapolis. The women phoned their family members with the bad news and rode the rest of the way in fear-filled silence.

At Children's, the doctors quarantined Julieanna in a double-doored isolation room in the pediatric intensive care unit. The little girl's body was dangerously hot. She was sensitive to light and noise. She lay on the big bed in the dark room, a heart monitor clipped to her toe and an IV in her arm.

Flint's family arrived quickly: her fiancé, Jeff Metcalf, and his mom, Flint's father and sister and the three boys. They scrubbed up and donned surgical masks and robes to enter Julie's room, two at a time. No one was allowed to touch her. The little girl looked so alone and ill on the big hospital bed that Flint began to weep.

After 24 hours at Children's, Julieanna's temperature dropped. The doctors moved her to a less intensive unit, and Flint and Metcalf stayed by Julie's crib, exhausted but too worried to sleep.

Around midnight, a strange sound—a hideous gargle—jolted them alert. Flint snapped to the baby's bed. Julieanna's lip was twitching, her shoulder shuddered, and then her whole right side convulsed.

"She's having a seizure," the nurse said.

Flint watched, helpless, as Julie shook for 13 minutes. Metcalf left the room, and when he came back, Flint was furious.

"How are you going to let me be here by myself?" she demanded.

"I was having a talk with the guy upstairs," Metcalf said.

Flint was shocked. Her fiancé never prayed. But two hours later, when Julieanna had another seizure, the couple prayed together. Flint felt peaceful, certain that God heard them.

Later that day, the reason for Julieanna's seizures became clear when the spinal tap results confirmed her diagnosis: meningitis caused by Haemophilus influenza type B—Hib. The doctors explained that the disease had once run rampant in pediatric wards, but had been rare in Minnesota for more than 15 years. There were usually only one or two cases in the state each year.

The doctors called for an MRI, which showed a massive pool of pus covering Julieanna's frontal lobes; she would need emergency brain surgery. The procedure was risky, but so was waiting. If they didn't move fast, Julie could become severely brain damaged or even die.

Flint filled out the paperwork, feeling as though she'd just signed her daughter's death certificate. She carried her baby down to the surgery room. The little girl clung to her mother so tightly that the nurse had to gently pry Julieanna out of Flint's arms.

The doctors quickly prepped Julieanna for the surgery. They lay her on the operating table, gave her anesthetic, and shaved the front of her head—her beautiful baby hair.

Then the neurosurgeon, Dr. Mahmoud Nagib, sliced open her skull in a smooth half-moon, from one ear and across the top of the head to the other. Nagib pulled back the skin and lifted the bone.

The hard, veiny outer covering of Julieanna's brain was coated with white, slimy pus. Nagib gingerly placed a drainage tube in the front brain ventricle and gently flushed the area with antibiotic fluid, washing away the mucus until the liquid ran clear. Nagib carefully replaced the bone and sewed the scalp closed, using more than 40 sutures.

The surgery took two hours. When Nagib finished, Julieanna's head was gently wrapped with gauze and topped with a little plastic hat to keep her from scratching at her wounds.

Nagib emerged in his scrubs, and the family swarmed him.

"Julieanna is fine," he said. "She woke up mad."

Flint laughed out loud with relief. The baby's grandmother, Colleen Metcalf, laughed, too and put her arms around Flint in an embrace.

The next day, as Flint stood by Julieanna's bed, the little girl had another seizure. Flint stormed into the parking lot, swearing, crying, and puffing on cigarettes.

"Are you fucking kidding me?" she yelled, at no one in particular.

Flint cringed as the doctors stuck the tubes of a ventilator up the little girl's nose, inserted a catheter between her legs, and administered medication through the IV to induce a coma.

"We're doing everything to save your daughter's life," a doctor told Flint. Julieanna's body needed to rest, so that all her energy could go toward getting better, he explained.

Julieanna looked near death. Flint called for a priest. The family held hands in a ring around Flint, who stood beside Julieanna's bed, as the priest administered last rites.

"Through this holy anointing may the Lord in his love and mercy help you with the grace of the Holy Spirit," the priest said, as he marked the baby's forehead with olive oil, spreading it with his finger in the form of a cross. "May the Lord who frees you from sin save you and raise you up."

Everyone was crying—except Flint, who wanted desperately to be alone. When the priest finished, Flint locked herself in the bathroom, turned on the shower, and scrunched her body down on the floor. She flipped on the video camera and watched home videos of the old Julieanna, healthy and playful and laughing, nothing wrong. Flint sobbed and sobbed.

Then Flint wrote God a note: "If she's so precious to you, then you can have her."

She put the note in a little plastic baggie with Julie's shaved-off hair and a little holy water. She slept near it, dreaming of Julieanna on a cool beach, happy and well.

The next morning, Flint approached Julieanna's bedside. "JuJuBear," she said softly. The baby flicked her toe.

Julieanna's brother Chris touched Julie's hand. "JuJu," he said. And the baby grinned.

The worst was over, and slowly, Julieanna began to recover. As a result of the illness, she'd forgotten everything she'd ever learned: how to swallow, crawl, walk, and talk. Her days filled up with therapy appointments. The doctors did more tests and discovered that she had hypogammaglobulinemia, a rare immune deficiency disorder. Julieanna's body lacked four antibodies needed to fight infectious diseases, the immunologist explained. Even though she'd been vaccinated, the immune deficiency made her vulnerable to contracting Hib. Julieanna was likely to face recurrent infections for the rest of her life.

On February 15, three weeks after she'd been rushed to Children's Hospital in Minneapolis, Julieanna finally went home to Watertown. But Flint lay awake each night, tossing in her bed. Julieanna was at risk. Would she survive the next time she got sick?

   

IN DECEMBER 2007, an investigator conducting a routine safety test at Merck's production headquarters for the Hib vaccine in Pennsylvania saw something that made him pause. A sample taken from the production line showed evidence of being tainted with Bacillus cereus—a bacteria that could cause symptoms of food poisoning. Thousands of children could be at risk for nausea and diarrhea.

On December 11, the company recalled 12 batches of vaccine—a quantity that was supposed to vaccinate the nation's babies against Hib through January 2010. Minnesota doctors began pulling the shots from their shelves. Only one other company manufactured an equivalent product, and it couldn't make enough to fill the gap.

The Centers for Disease Control and the American Academy of Pediatrics quickly stepped in with recommendations: Doctors should give the primary vaccine series to infants younger than seven months, and skip the booster for 12- to 15-month-olds. Complicating the shortage even further, doctors had to remember to give three shots of the replacement vaccine series, whereas Merck's vaccine had included only two injections.

To Lynn Bahta, a pediatric nurse and immunization consultant for the Minnesota Department of Health, the shortage created a predictable equation: Less vaccine meant more children would get sick. In fact, that was exactly what happened. In 2007, about 93.7 percent of children had the infant Hib series before they turned three, and only one child got Hib. But during the Merck shortage in 2008, Bahta and her colleagues discovered, less than half of the state's babies received the full three-series Hib vaccine by the time they were seven months old—and five children got Hib. One of the five children, a seven-month-old, died.

Bahta, one of dozens of healthcare workers investigating the Hib mystery, feared that the five cases were canaries in the coal mine. "In order to contain disease and prevent outbreaks, you need to have immunization rates of around 90 percent or higher," she explains.

Bahta knew that, historically, most Minnesota parents had vaccinated their children, but she also knew that the state's vaccination rates had been inching downward. In 1992, the rate of kindergarteners whose parents were conscientious objectors to vaccinations was 0.2 percent. By 2002, the latest numbers available, 1.27 percent weren't vaccinating. Had the numbers of people not vaccinating their children risen so high that now more kids were contracting Hib? Or had the shortage of the Merck Hib vaccine put more children at risk?

To solve the mystery, Bahta and her colleagues at the state health department investigated each of the Minnesota cases, searching for a common link. Did the families know one another, and had the children contracted the disease from each other? Or did they know someone in common who carried the disease and spread it from one child to the next? No, Bahta and her team found out, the five families lived miles apart in different counties, had never met, and knew no one in common. So were more children carrying Hib this year? No, the health department swabbed the throats of 1,600 kids and found no difference.

In fact, the only places in the country where Hib had gone up were Minnesota and Pennsylvania, where six children got sick and three died. The national rate hadn't changed a bit.

Still, the CDC took the Hib cases as an opportunity to push vaccines. "The increase highlights the need to ensure that all children complete the primary Hib immunization series," one CDC statement read.

In recent years, outbreaks of infectious diseases once thought to be eradicated in the West have popped up in several unvaccinated communities in Minnesota. In 1996, several children belonging to Christ's Household of Faith in St. Paul got the measles. In 2005, a polio outbreak hit an unvaccinated Amish community in central Minnesota.

Outside Minnesota, outbreaks of vaccine-preventable diseases have surged where vaccines are unpopular. Measles tore through unvaccinated communities in California, Arizona, and Washington last year, eventually infecting 127 people in 15 states.

"All you have to do is drop your guard a little bit, and these diseases come back," says Paul Offit, chief of Infectious Diseases and director of the Vaccine Education Center at Children's Hospital of Philadelphia. A prominent vaccine advocate and co-inventor and patent-holder of the rotavirus vaccine, Offit is disturbed by the trend of refusing vaccines. "I used to say this will change when children start to die. Now I'm starting to say, this will change when enough children die."

   

WHEN CHRIS ABEL QUIT HER JOB as a registered nurse, she did it for her children. Abel and her husband had chosen to have nine.

As a hobby, in her spare moments during the early 1980s, Abel began tracking infectious disease in Minnesota. She'd call the Minnesota Department of Health and learn as much as she could about each case. As she graphed deaths from infectious disease, she began to notice something odd: Vaccinated babies still got sick.

When her children were young, the Centers for Disease Control recommended only a handful of vaccinations. Abel watched, alarmed, as the load grew, from eight in 1980 to 22 by 2000.

Abel wasn't against vaccinations—as a nurse, she knew that infectious diseases had real risks. But she believed there was value in allowing children to develop immunity on their own, without the aid of vaccines. And when scientific studies began to suggest that vaccines might actually harm children, Abel found more reasons to doubt. She founded a nonprofit, Vaccine Awareness Minnesota, and began hosting parents at her home, showing them her research and explaining that they had a choice.

As Abel was spreading her message, a powerful current began running through the internet and on television talk shows—a wave of parents who believed that vaccines damaged children. Though the Centers for Disease Control and the American Academy of Pediatrics insisted that vaccines were safe, these parents didn't trust what they heard from the medical establishment.

The concerns over vaccines started back in the 1970s, when a British scientist claimed that the vaccination for pertussis, or whooping cough—given in the three-in-one DPT shot together with the diphtheria and tetanus immunizations—caused neurological damage to children. In the mildest of cases, the vaccine caused incessant screaming or high fevers. At the most severe, it could cause brain damage or even death. When a British documentary on the risks of DPT aired, vaccination rates plummeted.

The trend spread across the Atlantic in the early 1980s, catapulted by the NBC documentary "DPT: Vaccination Roulette," according to Offit, author of Autism's False Prophets, which examines the history of the vaccine controversy. The broadcast portrayed the medical establishment as blindly ignoring the evidence that DPT hurt kids. Parents were outraged, and a grassroots, anti-vaccine parent lobby grew strong.

So, too, did whooping cough epidemics. On both sides of the Atlantic, thousands of children contracted a disease that had been rare since the mid-1970s. In 1986, a special British court convened to assess the evidence against DPT. A judge conducted an exhaustive review, listening to the testimony of parents and medical experts, probing clinical literature, animal experiments, epidemiology, and biochemistry. In 1988, the judge determined that DPT caused no harm. But the DPT scare was just the first of many.

In 1998, British gastroenterologist Andrew Wakefield held a press conference to announce a shocking discovery. He claimed he'd found the measles virus in the inflamed guts of eight autistic children. His research would be published in The Lancet, Britain's oldest and most respected medical journal. The trigger for the inflammation, Wakefield suggested, was a vaccination: MMR, for measles, mumps, and rubella. Though Wakefield didn't explicitly make the connection, the British press did. "Autism 'linked' to baby vaccines," one headline screamed.

Respected scientists from major universities quickly backed Wakefield's work. An Irish pathologist at Coombe Women's Hospital in Dublin said he found measles RNA in 82 percent of children with autism. A biologist at Utah State University found high levels of antibodies against the measles virus in the spinal fluid and blood of autistic kids. A New York University gastroenterologist claimed that 40 children with autism had severely inflamed intestines. As the evidence stacked up, a theory took root: MMR caused inflammation and a leaky gut, releasing autism-causing proteins into the bloodstream.

Before long, MMR was joined by another scapegoat: thimerosal, a mercury-based preservative that had been used in vaccines for decades. In July 1999, the American Academy of Pediatrics and the U.S. Public Health Service issued a joint statement urging vaccine makers to eliminate the preservative. The statement tried to reassure parents that there was no imminent danger from thimerosal-containing vaccines. But if thimerosal was safe, parents wondered, why had the medical agencies felt such urgency?

Parents quickly lined up the symptoms of autism with those of mercury poisoning. The parallels were astounding: motor skill impairment, sensitivity to sound and touch, difficulty walking and swallowing. When father-and-son team Mark and David Geier claimed that autism developed more frequently in children who had received thimerosal-based vaccines, it looked like a silver bullet. Now there were two hypotheses about vaccines and autism: MMR triggered autism, or thimerosal did. Either way, parents had reason to fear the shots.

The fears escalated when Rep. Dan Burton (R-Indiana), the grandfather of an autistic child, marshaled congressional hearings on autism and vaccines, and when Robert F. Kennedy Jr. wrote a screed against thimerosal for Rolling Stone. Parents began taking their autistic children to physicians who would provide alternative treatments: chelation and magnetic clay baths to pull the mercury from their bodies, diets to detoxify them, vitamins to make them well.

In 2005, Lisa and J. B. Handley founded Generation Rescue, an organization that claims autism is caused by environmental factors and can be cured. Jenny McCarthy became the spokesperson and said on The Oprah Winfrey Show that diet and chelation had cured her son. The Handleys' organization paid for ads in The New York Times: "Are we poisoning our kids in the name of protecting their health?" As the evidence against vaccines grew, so did the list of shots recommended by the CDC—to 36 by 2008. Some 5,000 families sued vaccine makers in a special federal vaccine court, claiming that shots had made their children autistic.

Through it all, most physicians remained skeptical of the autism-vaccine link. But a handful of doctors, including Mayer Eisenstein in Chicago, found the evidence convincing. "We have approximately 35,000 children in our practice, and we have virtually no autism," he says. "The majority of patients don't vaccinate."

The first major cracks in the autism-vaccine hypotheses appeared in 2004. An investigation by Brian Deer, a British journalist who had helped exonerate DPT, revealed that Andrew Wakefield had taken money for research from a personal-injury lawyer who wanted to sue vaccine makers. Five of the eight children Wakefield had examined were the attorney's clients. These were serious conflicts of interest; 10 of Wakefield's 12 co-authors retracted the work.

Meanwhile, a growing body of scientific evidence debunked the claims that vaccines caused autism. Scientists in Finland, Britain, and at Boston University found no difference in the rates of autism in children who had received the MMR vaccine and those who had not. A 2004 examination of the medical records of 14,000 children in England found that, contrary to conventional wisdom, the more thimerosal children had been exposed to, the less likely they were to have neurological problems. The American Institute of Medicine reviewed more than 200 studies and soundly rejected the autism-vaccine connection.

The same conclusion was reached by a panel of three judges that convened to review the evidence in federal vaccine court. In 2004, the claims of some 5,000 families were combined into three test cases. Michelle Cedillo, a 12-year-old girl from Yuma, Arizona, would represent the theory that both thimerosal and MMR caused autism. The trial promised a courtroom drama of competing scientific testimony, but the evidence was overwhelmingly against Cedillo. On February 12, 2009, the vaccine court ruled that the autism-vaccine theories had absolutely no scientific basis.

After a decade of controversy, the verdict was in. But for many parents, the fight wasn't over. "Parents aren't going to believe that there's no concern until somebody does a large unvaccinated control group study," says Dr. Robert Sears, a California pediatrician and author of The Vaccine Book: Making the Right Decision for Your Child. "No matter how much a doctor tries to reassure them, or the majority of the research shows them that there's not a problem, there's still going to be a fear until we have that large unvaccinated research."

   

ON A BRIGHT APRIL MORNING in Washington, D.C., Brendalee Flint awoke early in her hotel room. It was going to be a big day, and she'd had trouble sleeping. She tousled her red hair and rimmed the edges of her green eyes with dark liner.

Flint went downstairs for breakfast while her fiancé, Jeff Metcalf, slept in. Afterward, Flint dressed Julieanna in the lace-edged purple princess dress she'd purchased for this day. She buckled the two-year-old's white patent-leather shoes, and pulled her hair into two neat ponytails.

Flint, Metcalf, and their daughter hopped in a taxi—they didn't want to mess up their fancy clothes by walking. The cab drove them a few blocks, past the Capitol to the Rayburn House Office Building, where congressional staffers awaited. The family sat down to a lunch of sandwiches and fruit. Julieanna and Metcalf ate, while Flint picked at her portions.

Flint listened with rapt attention to the speakers. The first was Amy Pisani, executive director of Every Child By Two, the organization that had flown Flint's family out. Founded by Rosalynn Carter and Betty Bumpers, the former first lady of Arkansas, the nonprofit holds periodic congressional briefings on vaccines, and had invited Flint to speak.

After Pisani spoke, Malinda Warden of the CDC talked about the swine flu, and Mark Sawyer, a pediatric infectious-disease specialist from the University of California, San Diego, described the measles outbreak in San Diego in 2008.

Next it was Flint's turn to walk to the podium. Faces gazed politely back at her. Flint told the audience about Julieanna's ordeal and how much it had affected their family. She talked about how she was terrified that it all might happen again.

"Parents need to understand that when they choose not to vaccinate, they are making a decision for other people's children as well," Flint said. "Somebody else chose Julieanna's path. I still see the scar every day."

The audience members nodded back at Flint, shaking their heads with sympathy. After her speech, a few people came up to Flint to shake her hand and ask questions. She felt relief to share her story. It didn't seem fair that someone like Jenny McCarthy could reach so many people while her little girl had no voice.

As the luncheon ended, Flint was already thinking about the future. Maybe there was a greater purpose in Julieanna's illness after all.

"Everybody always tries to figure out why something happens, when something bad happens to your family," Flint says. "Maybe this is it. Maybe this is my chance to speak out."

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