My son is missing several adult teeth.

We learned something was wrong from a routine x-ray image. There were my son’s baby teeth and gums. And then, underneath, there should have been a row of “tooth buds,” the dentist explained. The term made me think of plant shoots, but tooth buds look like, well, the teeth. Or at least they are supposed to.

For my son, then 7 years old, this second row was almost empty. It’s probably because it has a late flowering period, isn’t it?

This was not the case. The dentist explained that my son was congenitally missing adult tooth buds, meaning they weren’t formed in utero. By swimming in amniotic fluid, babies develop 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 that we should also be thinking about future teeth. How could we? From his first gaping cry, our son, like most newborns, was rocking a gummy mouth. As he grew, he went through all the developmental milestones depicted in baby books, including a mouthful of baby teeth, proudly displayed in his ear-to-ear smile.

So the news of missing adult teeth at the dentist’s office a few years ago sounded like an ambush. There were no red flags. My son had been blissfully unaware of the rare genetic disease with the odd name: oligodontia. If left untreated, it could one day affect his ability to bite and chew. I had a strange job as a parent: I had to prepare my son for a life where he would be missing more than half of his adult teeth.

I would soon learn that the absence of many adult teeth can be a real health problem – an extremely difficult problem to solve, since insurance companies cover teeth separately from the rest of the body.

Before the diagnosis, my husband and I often joked about the traits we had passed on to our children. Did our little one just throw a dump truck across the room in a fit of rage? Oh, he takes it from you. But with oligodontia, playful finger pointing has become more serious. What genetic heritage was responsible for the missing teeth?

We found the answer complex and the condition more common than we thought. The genes associated with congenitally missing teeth could be hiding in anyone’s genome, even if they have all of their adult teeth. Scientists have identified about 14 genes associated with missing teeth, such as MSX1, PAX9 and IRF6, but experts believe there is more to discover. According to National Organization for Rare Diseases, oligodontia affects less than a third of a percent of the population, which makes my son a unicorn. (Although if unicorns existed, he would be a fairly common species.)

Tooth agenesis, or missing teeth, is “relatively common,” said Tim Wright, a professor at the University of North Carolina Adams School of Dentistry. About 30% of people don’t have wisdom teeth like me, which was great because I avoided the extraction surgery. Up to 8% of the population suffers from hypodontia, which means that they are missing up to six adult teeth, excluding wisdom teeth. My husband falls into this category with a missing adult tooth, a fact that has always been considered unimportant. In early adulthood, he received a crown from his dentist to protect the baby tooth and was discharged. Those with anodontia do not have baby or adult teeth.

My son, who has oligodontia, falls in the middle. Many of his baby teeth may not fall out. Those who do will not be replaced.

The solution for missing teeth when you are an adult is dental implants. It is not advisable to add these implants to a facial skeletal structure that continues to grow; it would be like placing a pole on shifting tectonic plates. Experts recommend delaying implants until a child has stopped growing, which can be anywhere from age 12 to early 20s, depending on the person. During this waiting period for children with oligodontia, say dental experts, the most important action is to preserve baby teeth, to help provide the foundation and structure for future implants. As my son’s prosthodontist likes to say, “Giving us something to work with is better than nothing”.

In the future, my son, who will soon be 11, may need reconstructive jaw surgery to help align his bite and bone grafting to provide a solid foundation for dental implants because part of jaw growth is to house the teeth, Wright said. . 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 teenagers found that missing teeth negatively affect self-esteem and overall quality of life. “When you don’t have teeth, people will just laugh at you. You feel so ostracized and so weird,” said Brittany Lamm, of Newport Beach, Calif., who grew up with eight adult teeth missing. At 16, she underwent double jaw surgery. Now, at 24, she has completed a full mouth restoration with dental implants to fill in missing teeth. Her mother, Tricia Lamm, estimates they spent around $250,000 out of pocket to treat her condition.

The potential cost of treating oligodontia is terrifying to our middle-class family. Often these procedures are not covered by insurance companies, which consider them cosmetic, although not having adult teeth can affect your quality of life and make it harder to chew food. “If you are missing another body part, will that be considered a medical condition or not?” says Wright. “Most people would say it’s a medical issue.”

It’s as if the insurance companies want us to look on the bright side: at least my son has half of his teeth. He only has to crush his food for the rest of his life. Golf ball, everyone!

“You don’t put food in your nose or in your ear,” said Lori McNeel, a patient advocate at Ozark Prosthodontics, a hub for children and young adults with missing teeth. According to McNeel, families travel from 32 states to Fayetteville, Arkansas, for Ozark consultation and restoration procedures (about $125,000 to $150,000). The three-person billing team tries to compete for medical coverage from reluctant insurance companies to help pay the bill.

A law could make their work – and our lives – easier. If adopted, the Lasting Smiles Guarantee Act would require private health insurance companies to cover procedures for congenital conditions such as missing teeth. This passed the House of Representatives in April and is currently in Senate committee.

So far we have been lucky to find a specialist within driving distance (about 50 miles)

who has experience treating children with oligodontia – a challenge, as the disease is rare. Every few weeks I take my son to various orthodontist and specialist appointments to try and fix and maintain the teeth he has, with the long term goal of permanent implants and a functional mouth.

I often think of that day at the dentist’s office when he was 7 years old. I think about how, in our broken healthcare system, the burden of care is placed on families, who may not know the genetic implications of what a missing adult tooth, not much in and of itself, can portend for future generations. At the doctor’s office, we frequently fill out questionnaires about our family history, to rule out predispositions to genetic health problems, but I’ve never been asked about a history of missing teeth.

We decided to have our son genetically tested to determine if there is an underlying syndrome causing his missing teeth. If he ever accompanies one of his children to a visit to the pediatric dentist, we want him to be prepared. Knowledge doesn’t change the outcome, but it does at least provide a roadmap for asking the right questions. Until then, hopefully private insurance companies will see that the treatment of congenital diseases like oligodontia is medically necessary.

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