Lilly Harris was 2 days old when she first saw a doctor at Gillette Children's Specialty Healthcare, but it wasn't until she was 4 years old that she sat through her first teeth cleaning.
Harris, now 9, has cerebral palsy, a congenital disorder that affects body movement and muscle coordination. For years, it made it difficult to keep her mouth open wide enough and long enough for a proper checkup.
Then her mother, Adele Harris, learned something surprising about Gillette, the St. Paul hospital whose specialists had been treating Lilly for years. She discovered that it also had a dental clinic. Within 30 minutes, Harris said the Gillette dentist had cleaned off enough plaque that Lilly's teeth appeared half their former size.
"It was like her teeth were brand new," she said.
Patients like Lilly illustrate the special niche that Gillette has quietly created in the care of children who have severe disabilities — and why it just celebrated a major expansion of its dental clinic.
Gillette has been a local pioneer of "integrative care" — providing highly specialized medical care for children who have disabilities, but doing so with close communication among doctors and departments so that in a single day, patients can see a slew of specialists.
The integrative care philosophy, which syncs all of a patient's records and specialists, first appeared in 1960s-era geriatric care, but has gotten a renewed push in recent years, said Kevin Walsh, a director at the Developmental Disabilities Health Alliance. "The concept that has risen is we should build a medical home around people that sort of encapsulates all that," he said.
At the same time, Gillette discovered that for many of its patients — generally children with physical disabilities — medical care takes a priority over oral health. That can lead to painful infections or other serious dental problems.
The dental clinic's expansion aims to neatly weave oral care into patients' already complex web of medical needs.
Holly Bronson, manager of Gillette's clinics in St. Paul, Burnsville and outstate Minnesota, said a majority of patients have cerebral palsy, epilepsy or craniofacial anomalies, such as cleft palates.
"We've become very, very good at serving that unique subset," Bronson said. "Because we do it every day, we've become experts at caring for those children."
Gillette dentists know what to do, she said, for patients who can't communicate their pain, for example, or for those whose medications tend to cause tartar buildup. When children have trouble sitting still, the dentists calm them by tucking them into a "self-hug" using a special weighted blanket.
Even so, dental hygienist Jennifer Lee said, their equipment and space didn't match the work being done.
"It was not a dental office. It was just a room with two dental chairs," she said.
The staff has increased along with the expansion, which brought the number of dental bays to five, with one space left seatless for patients in wheelchairs. Two of the bays have electric lifts to help patients in and out of chairs.
"I've had parents come in who have been to five different dentists and they'll say, 'I don't think you can get anything done … people have tried,' " said Lee. "Nine times out of 10 we can get those X-rays and get those cleanings done."
Before her first visit to Gillette last April, Heather Wiberg said, she had grown frustrated by the lack of communication between the many doctors treating her son's spina bifida and bilateral clubfoot.
"We were always repeating ourselves and everyone was on a different page," she said. "For the first time since Westin was born, I left a doctor's appointment actually feeling relieved, that everyone was on the same page."
Wiberg drives nearly four hours from Wahpeton, N.D., to bring her son to Gillette. In one visit, Westin might get a kidney and bladder ultrasound, go to physical therapy, have his leg braces checked and have a consult with an orthopedic doctor, urologist and neurosurgeon.
"It makes for a long day, but it's our only option," his mother said.
In 2014, Gillette's dental clinic saw 2,800 visits, Bronson said, with some patients waiting months to see a dentist.
"Before the expansion, I can tell you it was really tough to cancel an appointment," said Adele Harris. In one instance, she said, her daughter got sick and couldn't come in as scheduled. They waited four months for another opening.
Staff members keep the challenges facing these families in mind, Bronson said.
"We always try to think: How many times does this child have to be taken out of school? How many days of work do parents have to miss? Having a dental clinic right within our clinic just makes it one less visit."
Marion Renault is a University of Minnesota journalism student on assignment for the Star Tribune.