Sarah's Smile

Sarah Hodapp has overcome many challenges in her short life. The 11-year-old has congenital myotonic dystrophy, or CMD, a disease that causes extremely weak muscles, mental retardation and sensitivity to respiratory illness. Her parents, Dee and Mike, adopted Sarah when she was six months old. They had first seen her on "Wednesday's Child," a KCNC-NEWS 4 segment that showcases children -usually kids with medical or psychological conditions-who need homes. They were ready to bring Sarah into their family.

"The doctors originally told us that we'd maybe have her for six more months," said Mike, who with his wife has been a foster parent to 30 medically fragile children, adopting 10. "Her immune system is suppressed, which makes her pretty fragile. We've had some really close calls with pneumonia, whooping cough -other respiratory illnesses that nearly took her from us. But she's survived, and she's truly a miracle to us."

When Sarah was 3, Dee and Mike noticed her baby teeth had come in already decayed. They suspected the CMD played some part.

"For Sarah, having teeth that don't hurt is especially important because it's already hard for her to eat," Dee said." The CMD makes the muscles in her mouth so weak. We were already struggling to keep her at a healthy weight by having her eat nearly every hour, so we knew she needed a dentist right away. But it's hard to find a dentist that specializes in children and works with special-needs kids."

After a long search, they visited a pediatric dentist who was well known for taking care of kids with special medical needs. But one look at Sarah's chart, and he decided she was too medically fragile to treat in his office. He referred the family to The Children's Hospital Dental Clinic, created by Bill Mueller IMD, in 1985 to accommodate underserved children and those with special medical needs.

"A number of people in the community told me there was no need for such a clinic, and indeed, it started slowly," recalled Mueller, chief of Dentistry at Children's. "In our first six months, we had 661 outpatient visits and 43 surgical cases."

Then again, a slow-starting train can gather speed. In 1 1998, the Dental Clinic had more than 12,000 outpatient visits and performed about 750 outpatient surgeries.

"Most general dentists don't see many patients with special needs -they don't often see a child who has ADD or autism," said Kevin Kizer, DDS, a first-year pediatric dental resident in Children's clinic." We see kids like that all the time. Our attending dentists and residents make incredibly good clinical decisions. All of the assistants are here because they love kids. People can be comfortable about coming here and getting the care their children need."

Dental problems can affect everything in a child's life, holding deep sleep at bay, hindering concentration and making eating difficult.

"Kids with dental problems are generally lagging behind physically and developmentally because they don't take in adequate nutrition," Mueller said.

A recent study by Children's National Medical Center in Washington, DC, found that children under age 4 with extensive dental problems are generally underweight compared to children of the same age with-out dental problems. After having their teeth fixed, all of the underweight children gained weight, and, by the end of the study, had caught up with other kids their age.

"Making sure children's dental health is good is just as important as taking care of their physical health, because in truth, these issues are one:' Mueller said.

About half of the clinic's patients have special medical needs that require collaboration with other pediatric specialists and primary care physicians. When a patient is receiving cancer treatment, a dentist can't simply dean teeth and fill cavities. The dentist must know whether the patient has an adequate blood count to fight infection, whether his body can handle local anesthetics and what medications he takes to avoid drug interactions.

"The patient takes medicine that sup-presses his immune system, so we have to treat in a point in his chemotherapy cycle when his immune system is strongest:' Mueller said.

Often medications or the medical conditions themselves can cause dental problems.

"Some medications decrease saliva, which makes the child more susceptible to cavities or causes gums to overgrow the teeth:' Kizer said. "Some kids' disabilities make oral hygiene nearly impossible, causing an increased amount of plaque. We understand these issues because we see so many of these kids. Educating families and modifying their treatment is second nature to us:'

Treating a child like Sarah who has multiple medical conditions takes collaboration, expertise and patience.

"You bring in a child like Sarah who's on two medications, whose immune system is suppressed -how is a general dentist sup-posed to know how to handle that?" Sarah's mother asked. "At Children's, they have the resources.

One of those resources is in-depth training in approaches to child behavior.

"Developmentally disabled or very young children often don't understand what we're doing, and it can be tricky to get them to relax," Mueller said. "So we use special techniques to make sure the child is comfort-able. Sometimes, that's explaining what we're doing in simple terms, or it may mean sedation. It might mean treating the child in day surgery.

Sarah underwent day surgery in 1991 to extract six baby teeth and to crown six more. Two years later, she had day surgery again to crown yet another six baby teeth. The crowns, made of stainless steel, will be pushed off as Sarah loses her baby teeth. Until then the teeth will be protected from decay.

In 1998, as her permanent teeth came in, Sarah required a third procedure to fill cavities in her permanent molars.

"It's much easier on kids like Sarah to fill cavities while they're under general anesthesia because the procedures would be too traumatic otherwise," Mueller said. "Where an adult might be able to handle going back to the dentist two or three times, a child who is disabled or very young often can't"

Not all patients in Children's dental clinic have special medical needs. About half come from low-income families, where such issues as culture, diet, lifestyle, behavior patterns and lack of access to care interfere with their receiving dental treatment. Only one low-income child out of five receives dental care in any given year.

"Often, the adults get the child out of pain and don't come back," Kizer said. "These parents have other concerns in life, like putting food on the table and making sure the family has a home. Often, teeth are only something you check when they hurt. So we're very aggressive in the way we treat these kids. We know how infection progresses and affects permanent teeth:'

Mueller agreed. "These children generally require multiple extractions and eight to 12 crowns - keeping in mind that kids have only 20 baby teeth to start with:'

With these barriers to care, Children's Dental Clinic frequently completes the child's care in one visit-often in the operating room. About 5 percent of Dental Clinic patients have procedures done under general anesthesia. Until last year, private insurance companies didn't have to pay for the anesthesia, leaving families with both health and dental insurance without a way to pay for the expensive care. But Mueller worked with state Rep. Joyce Lawrence, R-Pueblo, to man-date that health insurers cover anesthesia and hospitalization costs for pediatric dental procedures, as Medicaid does.

"What do you do with an 18-month-old who has 15 decayed teeth, or with a child whose cerebral palsy makes her physically unable to hold her mouth open?" Mueller asked. "Until this bill, these kids had no recourse, yet general anesthesia was a covered benefit for Medicaid patients. Now, health insurers have to do what's right for these kids."

Children's dental clinic staff also are experts in helping children feel comfortable coming to the dentist, with the goal of having them come back for preventive treatment

"It's a kids' places," Mueller explained, "The entire environment was created to make kids feel comfortable. Our staff understands how to talk to kids, and what body language makes kids relax. We physically get down on their level so they don't feel intimidated or scared:'

The clinic has five open treatment bays with windows and fun posters to distract kids during treatment. For children who may need more privacy, the clinic's five "quiet rooms" do the trick. Regardless of where the treatment is provided, all the dental instruments-often scary-looking tools, even to adults- are placed behind the child. X-ray view boxes are at kid-level. The drill becomes "Mr. Whistle," the slow-speed drill, "Mr. Bumpy:' The dentists use the entire spectrum of pain control-from an injection of local anesthesia to nitrous oxide to general anesthesia.

"At first we were a little concerned," Sarah's mom Dee said, "because we thought a hospital would be too sterile and scar y for kids. I've never heard anyone cry there- my children, or anyone else's"

"Since our first visit, nine of our kids go there," Mike said. "A family like ours would probably overwhelm another dental clinic, since there are so many kids and all of them have some sort of special medical condition. But they schedule our whole family at once, so we only have to make one trip. They've been very good to us."

Dee said when one of her children needed to have a tooth extracted, the staff coaxed him to "take a trip to Disneyland," during the procedure.

"They gave him nitrous oxide to relax him, and then described how he might feel 'Mr. Tickler' in his mouth," she said. "They helped him walk through that gate at Disney-land," and even asked him if he saw Mickey yet."

Parents receive up-close instruction on how to better care for their children's teeth, and kids receive a new tooth-brush - often glow-in-the-dark - and a fun toy.

"We don't want kids to be afraid, and the vast majority of them are not," Mueller said. "Our goal is that when they grow up," they will continue to take good care of their teeth and see a dentist regularly.

"We're pediatric dentists. It is our job, our responsibility and our mission to take care of children:"