Jonathan Charles Davis was born with ectodermal dysplasias, a disorder affecting the ectoderm, the outer layer of tissue in a developing fetus. The ectoderm contributes to the formation of many parts of the body, so those suffering from the disorder will often have abnormalities of the sweat glands, hair, teeth, skin and nails.
Jonathan didn’t develop enough teeth and was given his first set of dentures at age two. When he turned 15 he began a two-year process to get dental implants. Dental1 interviewed Jonathan after his final procedure.
Dental 1: You’ve been wearing dentures since you were two years old. What has it been like not to wear them now?
Jonathan: It’s just been crazy! My old dentures had to cover the whole roof of my mouth to get enough suction and that caused my gums not to get enough air. My gums used to get infected. But these new implants don’t need to do that so they can be skinnier and not have to cover all my mouth and gums. I don’t get infections anymore, which is really good. The big difference is that they are snug and I don’t have to worry about them slopping around in my mouth. Now when I bite I don’t hear that mushy sound of my dentures moving around. It’s just bone to bone contact, which is what I like the best.
Dental 1: Was it challenging to wear dentures at such an early age?
Jonathan: When I was a little kid my mom always used to find my dentures in my LEGOs because when I was playing, I would always take my dentures out. One time my dog got a hold of them and my mom woke up to find pieces of teeth all over the floor. Now they are in tight and I don’t worry about them coming out. It’s really been nice. I think I’m going to be in the Guinness Book of World Records as being the youngest kid to have dentures. I was reading the book with my mom and came across the entry that said the youngest kid with dentures was four years old. I told my mom we had them beat by a couple of years.
Dental 1: Were the dentures painful?
Jonathan: No because my doctors did a really good job. Sometimes it was like wearing braces – you know how sometimes they pull your teeth together or push them apart. That what is was like when I first got my dentures. Every time I got a new pair it was like wearing braces for about two months.
Dental 1: Did you get teased at all?
Jonathan: Not really. Kids thought they were funny. I’m kind of a goofy kid so I would joke around. When substitute teachers came to school I would ask them to hold something for me but they wouldn’t know what was in my hand. So they would kind of freak out. When I was in sixth grade I would usually pop them out and scare the little kids.
Dental 1: What’s the biggest challenge for you having ectodermal dysplasias?
Jonathan:Well, I made something bad in my life something good. Well, actually I don’t really see it as something bad, more of an obstacle. I don’t think having this condition is a handicap because I don’t make it into a handicap. Sometimes I didn’t even know I have it. The main thing for me growing up was not being able to sweat, because people with dysplasias don’t have any sweat glands. So I couldn’t do any sports and I couldn’t be outside in the summer that long. So that was hard sometimes.
Dental 1: So, you get overheated easily?
Jonathan: Right. Without sweat glands my body can’t cool itself down so I get overheated and my organs will literally start to shut down. So I have to be careful not to get overheated.
Dental 1: What was the first step in your amazing journey that started two years ago?
Jonathan: Well, we’ve wanted to do this since I was a little kid. The problem was that we had to wait for my gums to grow and to have a good shape. We started with taking bone from my hip. Because I didn’t have any teeth, the bone in my mouth started to deteoriate and did not have any strength. I didn’t have enough bone in my mouth to do the implants so we took bone from my hip and grafted it in onto my jaw and then we let that heal. We had to wait a whole summer for that to heal and get strong.
Dental 1: Was the bone graft painful?
Jonathan: Yes. We did it during the summer because we knew that it would be a long recovery process. So we did the bone graft in June, two days after my birthday and I was in bed for a month or two. I was only technically bedridden for about three weeks, but the pain made me stay in bed for about a month or two. We had a medicated pump going directly into my hip and I was on pretty strong medication for about a month. I wasn’t even able to get out of my bed until late July and from there I was just relaxing in our pool. But I wasn’t doing any activities and I didn’t leave my house until I had to go get my license at the license branch because I had to drive to school. So the picture for my license is actually my swollen face. I look like a chipmunk.
Dental 1: How did you keep your spirits up?
Jonathan: There was always that one thing in the back of my mind; this meant I would be able to get the implants and I wouldn’t have to wear the dentures. That made it easier even though it was a hard time. It was summertime and I couldn’t go outside but I knew that it was going to get a lot better. And it is – a lot better. My mom helped me out so much during that summer. At times I was down and she would remind me that it wasn’t forever. Sometimes I think my mom thinks it’s her fault because dysplasias is hereditary through females, so she feels guilty, which upsets me because it’s not her fault at all.
Dental 1: What happened after the bone graft?
Jonathan:After that we cut out the remaining teeth. I only had seven but we kept in my back molars on the bottom since they would be good anchors if we needed them. We took out my front canine molars. Once the teeth were out we went into surgery on December 28, 2005 to install top and bottom implants. They used the new implants that heal really quickly so by the 28th of June I had teeth on the bottom and teeth on the top. They put in the anchors and then screwed on healing caps and then folded the gums over that so it would heal faster. We had to let it heal for two or three months. On March 7, 2006, the representative from the Straumann Company came in along with Dr. Moenning and Dr. Kaminski. Some of the bottom implants were healed so they unscrewed the healing caps and put on these caps. And here I am!
Dental 1: Of the procedures which did you find the hardest?
Jonathan: The teeth weren’t that bad, they were just pulled out and they had to heal. The worst one for me was the actual implants because they asked me if I wanted to be put to sleep and I said no. So the procedure was four hours and I was awake the whole time. It was same-day surgery and I went home that night with my face hurting badly for about two days. But the pain medication I was on put me to sleep for actually a whole day. I was also on a soft liquid diet for about a week. Then in about two weeks I was able to eat very, very soft foods.
Dental 1: So what was the first thing you ate after your teeth were in?
Jonathan: A big cheeseburger. Even though I had to cut it up into small sections I could still chew it. That was great after almost two weeks of shakes, milk and mashed potatoes.
Dental 1: Were there any other complications along the way?
Jonathan: Actually we had a lot of problems with funding after I had my bone graft. Our insurance wouldn’t pay for the implants because they put them under a cosmetic procedure instead of something to treat a disease or a condition. But I see this as a medical need instead of a cosmetic one. Do you see braces as cosmetic or medical? We tried so many different things with the insurance company. We got my family doctor to write a note about the ongoing infections in my mouth and how implants would help my gums to get air so the infections would clear up. But they kept saying it was a cosmetic problem.
Dental 1: Did you panic when you found out the insurance company wasn’t going to pay?
Jonathan: I knew some way or another it was going to happen. The way my mom is that if there is anything blocking her way she is going to get right past it. And that’s exactly what she did. She started a fund. She got people at her work – she works at an engineering firm – and she knows the mayor of Indianapolis so using her friend and connections she has raised a lot of money for me. Dr. Moenning and Dr. Kaminski did their best to help me out as well and they found different ways to fund the program. They also put money in to help me get these implants. I’m very appreciative of them.
Dental 1: High school can be tough. Was it ever a worry for you doing this during school?
Jonathan: Yeah. That was one of my main worries next to the pain and the process. That was always in the back of my mind so that’s why we scheduled it so I wouldn’t have to go to school without my teeth in. It’s not that anyone would have made fun of me but it would have been awkward for other people around me and for me as well. We decided to put in my implants over the Christmas break so I could wear my teeth over them when I went back to school. We’ve made sure that every time I’ve had a procedure it was long enough that I had a recovery time so I wouldn’t miss school or be in pain.
Dental 1: How does it feel to have so many people helping you achieve your goal?
Jonathan: It’s overwhelming to see how many people care and have been so generous to help a kid have a better life. I really appreciate all my friends who helped, especially Dr. Moenning and Dr. Kaminski. They’ve been amazing, putting all their time into this. They are really great doctors. It’s been like a big circle coming together. The woman who first did my dentures when I was two years old somehow ended up working with Dr. Kaminski. She said she remembers making my dentures and how little they were. Dr. Kaminski was actually the first doctor who looked into my mouth when he came to my pre-school to visit. He was really helpful. It’s been a long journey but worth it.
Dental 1: Has this helped your self-confidence?
Jonathan: I’m feeling a lot better. Before I could eat an apple but not with the same strength as I have now. I can eat a lot better. Sometimes when I spoke my dentures would slip a lot and it would sound like I had a slur and I couldn’t pronounce things right. You can imagine trying to learn how to talk with this big hunk of plastic in your mouth. It’s going to take about a week for me to get used to my new teeth but afterwards I already know they are going to be great. A lot better than my dentures that always slipped around in my mouth. Sometimes I would joke with my friends about my dentures falling out when I was kissing a girlfriend but with these implants I don’t have that worry.
Dental 1: So what are your future plans?
Jonathan: I really want to be an engineer. I don’t know what kind yet but I’m in this project called “Project Lead the Way” at my school, which is a pre-engineering program. I hope to graduate from Purdue University with an engineering degree. These new implants are going to help me a lot because I will need to give presentations in college or for business and I’m not going to be worried about my teeth falling out. So, that’s going to help my confidence a lot.
Dental 1: What would you say to other kids suffering from the same condition who are thinking about doing this procedure?
Jonathan: I would say to them “go for it!” Don’t let other people convince you otherwise not to do something you want to do. Always think of the future and how wonderful it is. But it does take patience to get there. I remember being four years old and my doctor telling me, “well when you are 18 you can try these implants.” And today I am a few days away from being 18 and it really went fast so I’m glad I did this.
Dental 1: Are you going to miss the old dentures at all?
Jonathan: Well the only thing I miss is being able to pull them out and scare the little kids, but that’s something I can give up.
To read an interview with Jonathan Davis’ oral surgeon, Dr. Moenning, click here. To read and interview with Dr. Kaminski, Jonathan's dentist, click here.
Learn more about ectodermal dysplasias(ED)at www.nfed.org