On 11 January 2007, about 30 miles from Baltimore, a boy named Deamonte Driver – a normally energetic child – came home from school not feeling well. “He kept complaining of a headache,” his mother, Alyce Driver, said. His grandmother took him to Southern Maryland Hospital Center, not far from semi-rural Brandywine, where his grandparents’ red-and-white trailer home stood in the patchy shade of a grove of trees. He was given medicines for headache, sinusitis and a dental abscess. The following day, a Thursday, Deamonte went back to school.

“That Friday he was worse,” his mother said. “He couldn’t talk.” She took him to Prince George’s County Hospital Center, where Deamonte received a spinal tap and a CT scan. “They said he had meningitis,” said Alyce. The child was rushed to the Children’s National Medical Center in Washington DC, where he underwent emergency brain surgery. “They said the infection was on the left side of his brain. They had to remove a bone.”

On Saturday, Deamonte started having seizures. “The infection came back,” Alyce said. “They had to go back in.”

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Deamonte required brain surgery again, and this time the abscessed tooth was removed too. It was a molar on the upper-left side of his mouth: a so-called “six-year molar”, one of the first permanent teeth to erupt when baby teeth are shed, and particularly vulnerable to decay. This tooth was ruined, infected to the core. Bacteria from the abscess had spread to the boy’s brain. Alyce remembered a doctor telling her: “This kid is fighting for his life.” Her world, which was fraught with struggle on the best of days (she had been coping with homelessness since leaving a violent relationship), seemed to fall apart.

The extended family gathered around Deamonte’s bed and appealed to heaven. They called upon Jesus and asked him to save the boy. “He slept for two days straight. I said, is my baby ever going to wake up?”

Finally, Deamonte opened his eyes.

After more than two weeks at Children’s National, he was moved to the nearby Hospital for Sick Children, where he began an additional six weeks of medical treatment. He received physical and occupational therapy, did schoolwork, and enjoyed visits from his mother, his brothers and teachers from his school.

Yet Deamonte’s eyes seemed to be weak, his mother said, and his complexion got darker. On Saturday 24 February, he refused to eat – but still seemed happy. He and his mother played cards and watched a show on television, lying together on his hospital bed. After she left him that evening, he called her and said: “Make sure you pray before you go to sleep.”

Next morning she got another call. Deamonte was unresponsive. Alyce found a ride back to the hospital.

“When I got there,” she said, “my baby was gone.”

In the 21st century, thanks to professional care and advances in antibiotics and water fluoridation, reports of death by dental infection in the US are mercifully rare. But in Baltimore, experts at the University of Maryland School of Dentistry were not so surprised that a child had died, having regularly seen the grave consequences of rampant oral disease. They knew that people with good jobs and dental benefits had access to the American dental care system – but they also knew that people who were poor or working poor or underinsured, or who relied upon Medicaid, or who had no benefits of any kind, were often shut out.

Untreated cavities were common among the half a million poor, Medicaid-reliant children in Maryland, who included Alyce Driver’s boys. According to a study by the University of Maryland dental school, the pain of untreated cavities made 8% of these children cry – but Deamonte Driver did not complain about his teeth, his mother said. Maybe he felt that it was futile to complain. Or maybe he just took the pain for granted.

Deamonte had grown up in poverty, but in the shadow of great wealth and power. His grandparents’ home in Prince George’s County was about a dozen miles from Washington DC, the US capital. The state of Maryland is rich – one of the richest states in the nation.

Facebook Twitter Pinterest Deamonte Driver, who died in 2007, aged 12, after an infection from an abscessed tooth spread to his brain. Photograph: Washington Post/Getty

In November 2006, four months before Deamonte died, Prince George’s County had been featured in a lavish colour spread in Ebony magazine, under the headline “America’s Wealthiest Black County”. The story harked back to the county’s tobacco plantation past – but it was dominated by images of successful African Americans enjoying their yachts, golf courses and gated communities.

“This county embodies what we all have envisioned as the American dream,” mused one county official. “We are what America was set out to be.” But like the rest of America, Prince George’s County was a place of inequalities, nowhere more evident than in the mouths of the poor.

While affluent county residents who commuted to government and private-sector jobs enjoyed insurance coverage and a choice of medical and dental providers, poor and working-poor families grew increasingly isolated and faced dwindling access to care. Alyce Driver did not get dental benefits at any of her jobs. She was going without dental care – and so were her children.

In the summer of 2006, Laurie Norris, a lawyer for the non-profit, Baltimore-based Public Justice Center, had entered the lives of the Driver family. The organisation was conducting a series of interviews with homeless families, designed to explore their experiences with the school system. In July, Norris contacted the Drivers as part of the survey. In August, Alyce Driver called Norris back, seeking assistance with school registration.

In September, Driver called Norris again. This time she needed help with what turned out to be a much thornier problem: finding a dentist for her 10-year-old son, DaShawn, who was suffering from pain and swelling in his mouth. Several of his teeth had become decayed and were infected. Alyce explained that she had previously managed to find a dentist for DaShawn, but the dentist had discontinued treatments because he squirmed too much in the dental chair. The dentist had not referred her to another provider, and Alyce was not sure how to find one. She became discouraged.

“She had reached the limit of her understanding and ability to navigate Maryland’s complex Medicaid system,” Norris said. The lawyer joined the mother in the search. The project of finding a dentist turned out to be a major challenge even for an advocate equipped with confidence, legal training, and the support of an office and staff.

Norris began her effort by confirming that DaShawn was enrolled in Maryland Medicaid’s managed care plan, and that his care was provided through United Healthcare, one of the managed care organisations serving Maryland Medicaid beneficiaries. So she called United Healthcare’s customer service telephone number for help finding a dentist, but was transferred to Dental Benefit Providers, a separate company that administered the plan’s dental benefits.

At Dental Benefit Providers, Norris reached a customer service representative who explained that DaShawn would need to see a general dentist, who would provide a referral to an oral surgeon, who would be able to give him the treatment he needed. The representative also explained that the Medicaid portion of United Healthcare was actually called AmeriChoice: dentists providing care would be contracted to AmeriChoice, not United Healthcare. The representative searched her database, and gave Norris a list of several dozen general dentists located near DaShawn’s grandparents’ mobile home. She also warned Norris they would have to be sure the dentist was a provider under contract with “AmeriChoice through the state” – only those dentists would be part of the network providing care under DaShawn’s Medicaid plan.

Norris tasked her assistant with calling the dentists on the list to ask if they accepted “AmeriChoice through the state”. The first 26 said no.

On 5 October 2006, DaShawn finally got in to see dentist Arthur Fridley, who cleaned his teeth, took an x-ray and referred him to an oral surgeon. The oral surgeon said he could not see DaShawn until November, and that even then it would only be for a consultation.

At that appointment, Alyce Driver learned that DaShawn needed to have six teeth extracted. Unfortunately, eight days before his appointment on 16 January 2007, she had to cancel it, after finding out that her children’s Medicaid coverage had lapsed a month earlier. She suspected there had been a bureaucratic mix-up, and that the paperwork to confirm their eligibility was mailed to a homeless shelter where the family was no longer staying.

That was when Deamonte got sick.

The news of Deamonte Driver’s death appeared on the Metro page of the Washington Post on 28 February 2007, under the headline “For Want of a Dentist: Prince George’s Boy Dies After Bacteria from Tooth Spread to Brain”.

“Twelve-year-old Deamonte Driver died of a toothache Sunday. A routine, $80 tooth extraction might have saved him. If his mother had been insured. If his family had not lost its Medicaid. If Medicaid dentists weren’t so hard to find. If his mother hadn’t been focused on getting a dentist for his brother, who had six rotted teeth.”

The story went on to report the situation in Maryland and the greater Washington region; that some poor children in the state completely lacked dental coverage, while other families were travelling three hours to places such as the University of Maryland dental school to get care from dentists willing to accept Medicaid patients.

“I certainly hope the state agencies responsible for making sure these children have dental care take note, so that Deamonte didn’t die in vain,” Laurie Norris told the Post. “They know there is a problem, and they have not devoted adequate resources to solving it.”

At the time that Deamonte died, fewer than 20% of Maryland’s dentists were reported to be accepting Medicaid patients, according to Fridley, the dentist who had seen DaShawn, and who was the previous president of the state dental association. He said the system was in complete disarray.

“Whatever we’ve got is broke,” Fridley said. “[The system is not providing] access to care for these children.”

Emotions ran high at the monthly meeting of the local chapter of the National Dental Association (NDA), held shortly after Deamonte’s death. The NDA grew out of a meeting of black dentists, who were not welcome in many white dental associations, and needed their own professional organisation. In July 1913, about 30 charter members, from Maryland, DC and Virginia, gathered at a shoreline hotel in Buckroe Beach, Virginia, for the group’s first meeting. In later years, minority dentists from other states joined them.

Hazel Harper, a former professor at the dental school at Howard University, was at the meeting in March 2007. She remembered the dentist sitting next to her breaking down and sobbing: “We never would have turned that child away. We never would have let that boy die! It shouldn’t have happened.” Yet when Norris and her assistant had been searching for care for DaShawn, some of the group’s members had been called.

William Milton III, with his dreadlocks and outspoken style, did not practise in Prince George’s County. But he stood up at the meeting and said what was on a lot of people’s minds: “They are blaming it on us. They are blaming it on the dentists.”

One of Harper’s former students, Belinda Carver-Taylor, was at the meeting too. Carver-Taylor had a small office in Prince George’s County, located in a struggling shopping centre, tucked behind a grocery store and a pain clinic. The problems of the poor were not an abstraction for Carver-Taylor, who had suffered with painful dental problems as a child. She was the daughter of a single mother, who had struggled to support her family by working in a Tennessee shoe factory. After the factories started shutting down, the family moved to Maryland.

It was with her red-and-white Maryland Medicaid card that Carver-Taylor found the dental care she needed, relief from pain, and her future career. She was in high school when a dentist extracted four badly decayed molars, and made a partial denture for her.

“I was so glad to be able to eat,” she remembered.

The partial denture was not covered by Medicaid, but the dentist let her have it for free, telling her: “Do good in school!” In gratitude, she began helping around the dental office. Then she trained as a dental assistant. Then she went to dental school at Howard University, where she met Hazel Harper.

Amid the passionate discussion at the NDA meeting, the two women began to develop a plan. Children could not take themselves to the dentist – but maybe, with a mobile clinic, they could bring care to the kids.

“Those two took the ball and got it rolling,” said Milton.

On a cold morning in November 2010, the new Deamonte Driver Dental Project mobile clinic made its maiden voyage. The sparkling vehicle, larger than a school bus, decorated in tropical colours and equipped with three dental chairs, pulled up in front of its very first school: the Foundation School, where Deamonte had been a student.

“This is my dream,” declared Carver-Taylor, as she waited in the stillness for the first children to climb on board. She still carried the memory of her own childhood pain.

The steps of the mobile clinic folded down and the project manager, Betty Thomas, leaned out of the door and smiled at the waiting children. “Are you ready?”

Four little boys, dressed in khaki trousers and polo shirts, came in together and huddled shyly. Soon the clinic was humming with children. Thomas did oral health education in the front of the bus with the kids who were waiting on a little bench behind the driver’s seat. “How many times a day are we brushing our teeth?”

Facebook Twitter Pinterest Dr Belinda Carver-Taylor (left) cleans a child’s teeth inside her mobile surgery, The Deamonte Driver Dental Project. Photograph: The Washington Post/Getty Images

The first boy to climb into Carver-Taylor’s chair was quiet and polite and had four cavities. The next studied himself in her little mirror. “Hey, I got nose hairs!”

Another at first refused to open his mouth. “You’re not gonna get my teeth!” he declared.

The work went slowly. There were 50 children signed up, and between Carver-Taylor and Clark, they only managed to see about seven in the first hour. A third dentist who had volunteered had not shown up. They kept working.

“Every time I turn around, I see another child,” said Clark. “They keep popping up!”

Late in the morning, a tall 16-year-old with terrible toothache came in. Marcus Johnson said the pain felt like “a needle stabbing me in my teeth”. The boy’s case was declared a dental emergency; his mother was called, and he was swept away for immediate care to a designated “dentist in action” with an office nearby.

The 50th child to arrive was a girl who had been in Deamonte’s grade. She was pretty, with sad eyes and seven cavities. Then Marcus Johnson returned, smiling, with the first stage of an emergency root canal completed and another appointment scheduled.

“This makes it all worthwhile,” said Thomas. “To know some child who was hurting is out of pain.”

Autumn and winter passed. A violent spring came to Prince George’s County. By the time the mobile clinic reached the troubled community of District Heights in April 2011, the county had already experienced 23 homicides that year. The first child to climb aboard the mobile clinic that April morning was a tiny pre-kindergartener named Tashara Tavia Morton Dodson. She had long intricate braids and earnest eyes. On the left breast of her blue school uniform, she wore a large badge. It bore the laminated photograph of a young black man, and the inscription “RIP Daddy”.

Carver-Taylor did not comment on the badge. She placed a paper bib on the child and examined her, noting the steel crowns on some of her baby teeth. She showed Tashara the little brush she was putting on the end of her handpiece to clean her teeth. Each brush had soft bristles and was shaped like a tiny animal.

“Look! We got the giraffe! Open big, big, big!” When she was done, Tashara chose a sticker that said “excellent” and stuck it on her uniform, next to “RIP Daddy”.

The bench at the front of the van was full of children waiting to see the dentist. Tashara found a seat on the floor and waited to go back to school with her class. She explained the badge with her father’s face on it.

“The police killed him five times.” Her father had been named Trayvon Dodson. The police said that he had been armed, and possibly on drugs, when they shot him in a park on 7 March.

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It was time for the preschoolers to return to their studies. Tashara and the others gathered to leave. They trailed past a row of daffodils and through the dented metal door back into their school. Older children arrived – more of them than expected. Carver-Taylor worked steadily, through the fourth graders, then the fifth graders, talking and joking with them.

“Oh lord, I remember fifth grade,” Carver-Taylor said. “I had my first boyfriend. Do you have a boyfriend? Good. Wait till the next grade. He gave me a little Valentine and everything.”

They started the day with more than 70 kids on the list, but 100 showed up. Some parents did not sign the consent forms but then called in, wanting their children to be seen, as project manager Betty Thomas explained a little frantically.

“C’mon! Time’s a-wasting!” she said, then turned to the next group on the bench. “OK. Let’s talk about proper brushing.”

The mobile clinic covered many miles and stopped at many schools. Carver-Taylor and her colleagues saw thousands of teeth: healthy teeth and decayed teeth and abscessed teeth. Teeth with Oreos between them. Children laughing, children weeping in terror.

Fluoride varnishes and protective sealants were applied, referrals to dental offices were made, charts were filled out, parents called. Betty Thomas, wielding her giant toothbrush, showed countless children how to clean the teeth of a grinning lion puppet.

On the frigid evening of 25 February 2012, the fifth anniversary of Deamonte’s death, Alyce Driver – by now working as a dental assistant, sometimes in Carver-Taylor’s office and sometimes on the mobile clinic – organised a memorial vigil on the steps of the Foundation School. The wind was bitter.

A small knot of family and friends gathered. Lawyer Laurie Norris – who was now working on a national level to hold state Medicaid dental programmes accountable, through her role as a senior policy adviser at the Centers for Medicare and Medicaid Services – distributed white candles from a box in the boot of her car.

Songs were sung against the sharp wind. It was hard to keep the candles lit. But as the sky darkened, a slender crescent moon appeared, along with Venus and Jupiter.

On a weekday morning, the Prince George’s County Health Department also commemorated that fifth anniversary, with speeches and a breakfast buffet. Congressman Elijah Cummings was there. He quoted the prophet Jeremiah, standing beside a large photograph of Deamonte. In the audience was Alyce Driver, dressed in her scrubs, with tears in her eyes.

The Deamonte Driver Dental Project mobile clinic was parked outside, offering tours to dignitaries and care to schoolchildren. Alyce took some fruit from the buffet and climbed aboard. She quietly went to work beside volunteer dentist Mfon Umoren.

Alyce guided the children back to the dental chair one by one, removing their woollen hats and wiping their runny noses, tucking the paper bibs under their chins, comforting the ones who were frightened. She took up the clipboard with a paper chart for each child. She listened as Umoren examined each tooth and offered her assessment. She used a red pen to mark the diseased places on the chart.

Around Alyce, the mobile clinic bearing her son’s name was a small, plain, well-lit world. The instruments whirred and pulsed, and beneath their sounds was the hum of the generator that powered the clinic. It was the hum of a battle against disease; the battle for health, plain and ordinary, being fought one tooth at a time, at the heart of a silent epidemic.

Main image: Lloyd Fox/Baltimore Sun/MCT/Getty. This is an adapted extract from Teeth: The Story of Beauty, Inequality and the Struggle for Oral Health in America by Mary Otto, published by The New Press.

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