We learned something was wrong from a routine X-ray image. There were my son’s baby teeth and gums. And then, below, there should have been a row of “tooth buds,” the dentist explained. The term made me think of plant sprouts, but tooth buds look like, well, teeth. Or at least they’re supposed to.
For my son, then age 7, that second row was mostly empty. Surely it’s because he’s a late bloomer, right?
It wasn’t. The dentist explained that my son has congenitally missing adult tooth buds, which means that they failed to form in utero. While swimming in amniotic fluid, babies grow vital organs, limbs, and yes, tooth buds. These are masses of cells that form structures under the gums that eventually emerge as teeth.
After my son was born, we ceremonially counted his fingers and toes. But we had no idea we should also think about future teeth. How could we? From his first cry, with mouth agape, our son—like most newborns—was rocking a gummy mouth. As he grew, he hit all the developmental milestones outlined in baby books, including a mouthful of baby teeth, proudly showcased in his ear-to-ear grin.
So the news of missing adult teeth at the dentist’s office a few years ago felt like an ambush. There had been no red flags. My son had been blissfully oblivious to the rare genetic condition with the weird name: oligodontia. If it were left untreated, it could someday affect his ability to bite and chew. I had a strange task as a parent: I needed to prepare my son for a life where he would be missing over half his adult teeth.
I’d soon learn that the absence of many adult teeth can be a true health problem—one that’s maddeningly hard to fix, because insurance companies cover teeth separately from the rest of the body.
Before the diagnosis, my husband and I often joked about traits we passed down to our kids—did our toddler just throw a toy dump truck across the room in a fit of rage? Oh, he gets that from you. But with oligodontia, the playful finger-pointing became more serious. Whose gene pool was responsible for the missing teeth?
We found the answer to be complex, and the condition more common than we thought. The genes associated with congenitally missing teeth could be lurking in anyone’s genome, even if they do have all their adult teeth. Scientists have identified about 14 genes associated with missing teeth, like MSX1, PAX9, and IRF6, but experts think there are more to be discovered. According to the National Organization for Rare Disorders, oligodontia occurs in less than a third of a percent of the population, which makes my son a unicorn. (Though if unicorns existed, he would be a somewhat common species.)
Tooth agenesis, or missing teeth, is “relatively common,” said Tim Wright, a professor at the University of North Carolina’s Adams School of Dentistry. About 30 percent of people are missing wisdom teeth—like me, which was great because I avoided extraction surgery. As much as 8 percent of the population has hypodontia, meaning they are missing up to six adult teeth, excluding wisdom teeth. My husband falls into this category with one missing one adult tooth, a fact that has always been treated as no big deal. In early adulthood, he was given a crown by his dentist to protect the baby tooth and was sent on his way. Those with anodontia have no baby or adult teeth.
My son, with oligodontia, falls in the middle. Many of his baby teeth may not fall out. The ones that do won’t be replaced.
The fix for missing teeth when you’re an adult is dental implants. It’s not advisable to add those implants to a facial skeletal structure that’s still growing; it would be like placing a post onto shifting tectonic plates. Experts recommend delaying implants until a child has stopped growing, which could be anywhere between age 12 to one’s early 20s, depending on the person. During this wait period for kids with oligodontia, dental experts say, the most important action is to preserve the baby teeth, to help provide the foundation and structure for future implants. As my son’s prosthodontist likes to put it, “Giving us something to work with is better than nothing.”
In the future, my son, who will soon turn 11, may need reconstructive jaw surgery to help align his bite and bone grafting to ensure a solid foundation for dental implants because part of the reason the jaw grows is to house the teeth, said Wright. Fewer adult teeth can mean less bone.
Then there’s the social and emotional impact of having a smile with missing teeth. A study of 1,140 adolescents found that missing teeth negatively affect self-esteem and overall quality of life. “When you don’t have teeth, people are just going to make fun of you. You just feel so ostracized and so weird,” said Brittany Lamm, of Newport Beach, California, who grew up missing eight adult teeth. At 16, she underwent double jaw surgery. Now, at 24, she has completed full-mouth restoration with dental implants to fill in the missing teeth. Her mom, Tricia Lamm, estimates that they spent about $250,000 out of pocket to treat her condition.
The potential cost of treating oligodontia is terrifying for our middle-class family. Often, these procedures aren’t covered by insurance companies, which consider them cosmetic—even though not having adult teeth can affect your quality of life and make it harder to chew food. “If you’re missing any other body part, would it be considered a medical issue or not?” said Wright. “Most people would say that’s a medical issue.”
It feels as if insurance companies want us to look on the bright side: At least my son has half his teeth. He just has to mash his food up for the rest of his life. Golf clap, everyone!
“You don’t put food through your nose or in your ear,” said Lori McNeel, a patient advocate at Ozark Prosthodontics, a hub for kids and young adults with missing teeth. According to McNeel, families travel from 32 states to Fayetteville, Arkansas, for Ozark’s consultation and restorative procedures (about $125,000–$150,000). The billing team of three tries to wrangle medical coverage from reluctant insurance companies to help with the bill.
A law could make their jobs—and our lives—easier. If passed, the Ensuring Lasting Smiles Act would require private health insurance companies to cover procedures for congenital conditions like missing teeth. It passed the House of Representatives in April and is currently in Senate committee.
For now, we have been lucky enough to find a specialist within driving distance (about 50 miles)
who has experience treating kids with oligodontia—a challenge, since the condition is rare. Every few weeks, I shuttle my son to various orthodontist and specialist appointments to try to fix and sustain the teeth he does have, with the long-term goal of permanent implants and a functional mouth.
I often think about that day at the dentist’s office when he was 7. I think about how, in our broken health care system, the burden of care is placed on families, who may not know the genetic implications of what one missing adult tooth, no big deal on its own, can portend for future generations. At the doctor’s office, we frequently fill out questionnaires about our family histories, to weed through predispositions for genetic health conditions, but I was never once asked about a history of missing teeth.
We decided to get our son genetically tested to figure out if there’s an underlying syndrome causing his missing teeth. If he ever accompanies a child of his own to a pediatric dentist visit, we want him to be prepared. Knowledge doesn’t change the outcome, but it at least provides a road map to ask the right questions. By that time, hopefully private insurance companies will see that treating congenital conditions like oligodontia is medically necessary.