A scar that runs along the base of Dr. Lara Johnson’s neck serves as a permanent reminder of the devastating effects of a vaccine-preventable disease.

When Johnson was 4 years old, she caught a dangerous, potentially deadly bacterial infection: Haemophilus influenzae type b, commonly called Hib.

The bacteria attacked her epiglottis, the piece of cartilage that covers the windpipe when eating so food doesn’t get into the lungs. Her airway was closing up and she couldn’t swallow.

“I had a fever and felt like I was choking,” recalls Johnson. “I thought I needed to throw up.” She was taken to Covenant Children’s Hospital in Lubbock, Texas, where she now serves as chief medical officer, for an emergency tracheostomy. Doctors had to cut through her neck and into her windpipe so she could breathe. Antibiotics treated her infection, the plastic airway was removed and she recovered.

It was 1980. A Hib vaccine wasn’t available until seven years later.

Prior to the vaccine, about 20,000 children in the United States — mostly babies and toddlers — developed severe forms of Hib every year, according to the Centers for Disease Control and Prevention. Many children were left with permanent brain damage. About 1,000 children died each year.

After vaccinations began, the number of Hib infections dropped to fewer than 50 a year. Many doctors who’ve trained in the past 40 years have never seen a case.

Now, parents who haven’t experienced the frightening effects of the highly contagious and fast-moving infection are increasingly opting out of vaccinating their kids against Hib. Last week, the CDC reported that the percentage of babies who got the full series of Hib shots fell slightly from 2019 to 2021, from 78.8% to 77.6%.

Doctors like Johnson, who a year ago was treating children hospitalized with measles during the West Texas outbreak, are sounding the alarm on Hib, fearing it could be the next vaccine-preventable disease to make a comeback.

“Measles is the beginning,” said Utah’s state epidemiologist, Dr. Leisha Nolen. The state is in the middle of an accelerating measles outbreak, with 559 cases as of Tuesday.

As more people stop vaccinating children against diseases, Hib “is something that we might see soon,” Nolen said. “It’s really tragic to think we’re going to have to go back to having emergency rooms filled with little babies who have this highly, highly deadly and dangerous disease.”

A ‘changing world of medicine’

The CDC does track Hib cases, but the numbers can lag for a year or more because states don’t report cases quickly as they would during acute outbreaks like flu or measles.

As of March 21, the CDC had logged eight cases so far this year: two each in Ohio and New York, plus one case each in Kansas, North Carolina and Tennessee.

Conversations with pediatricians suggest additional Hib cases are occurring and causing severe illness.

Dr. Kathryn Edwards, a vaccine safety expert and professor of pediatrics at Vanderbilt University Medical Center in Nashville, Tennessee, said her colleagues recently treated two cases of Hib-related meningitis. Previously, Vanderbilt hadn’t had such a case for “a number of years,” she said.

Dr. Eehab Kenawy, a pediatrician in Panama City, Florida, said that in December, the local hospital’s intensive care unit treated two young children with Hib who were visiting the area from other states. One was a 2-year-old, he said. The other was a 4-month-old who died. “Both were unvaccinated,” he said.

Kenawy didn’t personally treat either child but was on call at the time the patients were there. “I’d never seen a case of Hib for years and years. Now I’m hearing about it.”

The possibility that Hib could make a comeback means that doctors have to start thinking differently — and possibly more aggressively — when a young, unvaccinated patient comes in with what looks like a typical bacterial infection.

“Now I’m not just thinking ‘strep throat, ear infection, upper respiratory infection.’ We have to start thinking about these things as a differential diagnosis in our workup,” Kenawy said. “It puts us in a situation where we may have to do more close observation, possibly more admissions, maybe some unnecessary workup at times. It’s the changing world of medicine.”

What is Hib?

Despite the name, haemophilus influenzae bacteria don’t cause the flu that circulates every winter. They’re bacteria that can live in noses and throats without necessarily causing trouble. Haemophilus influenzae type b (Hib) is one of several types of the bacteria.

Even people who aren’t sick can spread Hib to others through coughs and sneezes. Sometimes the bacteria cause problems that are relatively easy to treat, like ear infections. They can also cause serious, invasive infections in the lungs, blood stream and joints, as well as the epiglottis like in Johnson’s situation.

It’s Hib’s ability to cause inflammation of the brain and spinal cord — meningitis — that still frightens doctors who remember what it was like treating kids before the vaccine was available. Doctors diagnosed it by doing a lumbar puncture, or spinal tap, to analyze their cerebrospinal fluid.

“When I trained between 1977 and 1980, I would do two to three spinal taps a night,” said Dr. Paul Offit, a pediatrician and director of the Vaccine Education Center at the Children’s Hospital of Philadelphia. Hib was a leading cause of bacterial meningitis in kids under age 5 at the time. “Now pediatric residents in our hospital don’t do spinal taps, which tells you the power of vaccines.”

The CDC recommends three to four Hib shots (depending on which brand they get) for all kids under age 5. Studies have shown the full series is at least 93% effective in preventing the bacterial illness.

It’s not just Hib vaccines that are on the decline. A 2025 NBC News investigation with Stanford University found that childhood vaccination rates overall have fallen in at least 77% of U.S. counties and jurisdictions since 2019.

The number of parents hesitant about vaccines and medicine in general has risen in recent years.

“You’re always going to see people who will ‘no’ to anything, but it’s increasing,” said Dr. Rana Alissa, president of the Florida chapter of the American Academy of Pediatrics. “Now we’re almost seeing a free fall.”

Robert F. Kennedy Jr. has fueled anti-vaccine sentiments further since becoming health and human services secretary. He’s downplayed measles outbreaks, even after two young girls died last year in Texas. And he led the overhaul of the childhood vaccine schedule — a move that was recently blocked by a federal judge.

Doctors are desperate to undo the damage so that vaccine-preventable diseases remain in the past as much as possible.

“The last night I was a pediatric resident, a child came in with Hib and promptly died by the next day,” said Vanderbilt’s Edwards, whose residency was in the 1970s. “I didn’t work for 50 years to have everything destroyed by one man.”

It’s been almost a year since Ashlee Dahlberg lost her 8-year-old son, Liam, to Hib. On April 24 last year, Liam came home from school complaining of a headache. She said she gave him some ibuprofen, which perked him up temporarily.

When he woke up for school the next day, she said, Liam had spiked a 103 degree fever and “seemed off.”

“He was dizzy and couldn’t stand,” she said. “He was very delirious but he was still able to answer questions correctly.” Doctors at the hospital near their home in Lowell, Indiana, ran tests that suggested Liam might have meningitis and transferred the boy about an hour north to a larger hospital in Chicago.

Liam needed to be sedated so that doctors could do a lumbar puncture for a clear diagnosis. Testing revealed Liam’s body had been invaded by Hib and that it had turned into bacterial meningitis.

By April 26, Dahlberg said, MRI scans showed that her son’s brain had swollen so much that the damage was irreversible. They took him off life support two days later.

Liam and his two sisters had been vaccinated. But his immune system was susceptible to illnesses like Hib, Dahlberg said, because he’d been on an inhaled steroid to treat asthma. She is speaking out about her family’s loss to encourage other families to vaccinate their children to protect kids like Liam — as well as his younger sister who also has asthma.

“What I would really love for other people to understand is that there are people out there who are like my son, who have weakened immune systems,” Dahlberg said. “What may be a cold for your child is a death sentence or a hospitalization for another.”

“I don’t want my youngest to follow in the same footsteps with her health issues that Liam did,” she said. “I would not be able to survive the loss of another child.”