Who is it really for?

Driving home from our umpteenth trip to the dentist in Coffs Harbour (no mean feat mind you) I reflected on what we achieved so far. We have one son with three caps on his front teeth, we had three top dentures and we have now got 3 x-rays each of their jaws. We have let them miss a day of school for the last 4 years in a row. We have driven 250 kilometers each time and the kids have gotten used to long trips.

Then, as I am listening to the yawns from the back of the car and looking over at hubby half asleep, I wondered what it was all for.  More to the point, who it is all for.

Their teeth, well, they are slow-growing, come out erratically and don’t really have a plan. From the reports of all dentists they have seen so far they are lucky with their teeth. The enamel is strong and they have no cavities which is an absolute bonus.  Sure they are still baby teeth and in Sebastian’s case they will be the only teeth he’ll ever have, but they are strong teeth and fully functioning.

When Sebastian had his front four capped, it was fantastic. He didn’t get excited by his looks, he got excited because he could chow down on a cob of corn and leave tooth tracks 🙂 As for teeth down the bottom, in his words :” I could do with two square teeth to help my two pointy teeth.”


Matthew, well, you can’t talk to him about “changing” his teeth.  He is fiercely proud of his shark teeth and he has no problems eating at all. So, am I doing it for him?

Nathanael, he desperately wanted teeth . He used to take great delight in wearing his brother’s old dentures until his own teeth came though. Now he has issues far deeper than having no teeth and I can’t help but feel responsible for having given up on the fight for him. Unfortunately, if he doesn’t like the feel of food in his mouth, how is he going to handle teeth in there, even worse, the process of making them. Is this for him?

Well, if we were not doing this for Sebastian, or Matthew, or Nathanael, the only people aside from us, was the general public. Were we subconsciously driven by appearance expectations of the people around us? Have I somehow lost the vision of the teeth for my kids to be directed by what looks acceptable to everyone else? Have I forgotten to ask the boys what their wishes in all this are?

Yes, to all the above. I have realised that despite my wish to let the boys have teeth to put in “if they want to” I have become driven to get them the dentures to “become acceptable”. 

I had studied up on the pro’s and con’s of dentures, the good the bad the ugly, all of it. I knew that the greater percentage of kids who had dentures would only have them in sporadically and hardly ever to eat with. I knew that we would have to almost sedate two of the boys to get the casts done to have the dentures made in the first place. I also knew that dentures will neither aid or hinder the growth of jawbone. Yet here I was, still searching for teeth.

I had forgotten to ask the boys.

Here I am on the evening before another appointment, pondering why we are doing this to them.

No number of appointments are going to make the remaining teeth grow faster. No x-ray is going to produce more teeth in any of their gums. No peer pressure at school is going to force the boys to see themselves as different. They are the normal kids and all the other children around them are the weird ones with too many teeth. This is how it is, has been and always will be.

As long as their jaws are strong and their teeth are working I shouldn’t be concerned. As long as the boys are happy and talk openly to me about their worries or concerns, I won’t be worried. As long as they want to teach as many dentists out there as possible about Hypohidrotic Ectodermal Dysplasia, I am proud.

When they say “stop please mum, we’ll tell you when we want them” I will rest.

With love and support,

Tarja Kelly


11 Responses to “Who is it really for?”

  1. 1 Hari Kotrotsios 03/08/2011 at 5:41 pm

    Tarja, we do often forget to ask kids what they actually want! However, the fact that your kids are happy and not influenced by peer pressure or appearances is awesome. I’m sure they’ll let you know what they want and when – and no doubt teach the rest of us in the process.

    • 2 tarjakelly 03/08/2011 at 5:57 pm

      I vaguely remember asking the two older boys almost 7 years ago and I think it was the last time I really did. What I think has helped the most is that they are all the same. If I had one son with HED and the other two didn’t I dare say the story could be very different again. I am just grateful they are so comfortable with what they are. I am also grateful for the increased awareness and support from people just like yourself. For this I would like to thank you.

  2. 3 Michele 03/08/2011 at 6:32 pm

    It is fantastic credit to you that they are so comfortable with who they are and don’t wish to be different! I will just add though that I was very comfortable with my buck teeth as a child and did not want braces, or feel that I needed them but when I look back now I have to thank my parents so much for forking out and getting my teeth fixed. I guess that is the lonely part of being the parent sometimes, being the one who knows best and not getting a thank you until 30 years later.

    • 4 tarjakelly 03/08/2011 at 8:20 pm

      I am not giving up, I am merely letting the boys decide they want the teeth. We are in constant communication with their dentist and there is simply nothing apart from dentures which can be done until they are 11 years old. There is nothing wrong with their tooth placement which will inhibit proper jaw growth or speech so there really is nothing to be done or overly worry about. With Nathanael especially, we spoke about all his issues and she was really concerned that he will not tollerate the dentures if they fit him snuggly like they are supposed to. She also doesn’t want to sedate him for the mould process if he become too distressed, that would put him off teeth for good. We’ll see what the dentist tomorrow has to say anyway.

  3. 5 Yalena 07/11/2011 at 1:36 pm

    Would it be possible for you to email me personally? I have a newborn baby that docs may think has ED. I have never heard of it before now and I really need someone to talk to.
    Thank you in advance.

  4. 7 Jeanne ferns 19/04/2012 at 2:37 pm

    Tara my husband has a form of ED and I am 10 weeks pregnant. I’m very nervous and would like a little info if you could please email me that would be great!

  5. 10 Melissa Wentzel 08/12/2012 at 2:33 pm

    Tara, it was such a pleasure reading your posts. I am so impressed and hopeful about how comfortable your boys are with their ED. My 4-yr old was just diagnosed, and now everything is starting to make sense: his teeth, his hair, shape of his face, always being hot. He’s just become conscious that his teeth are different, and he told me the other day he doesn’t like that. I’m not sure how to buoy his self-esteem. We’re also moving to Darwin, Australia in a year, to be with family. I’m wondering if you know of any resources up there, and how we would handle his heat-issues. Thank you so much for your story!

    • 11 tarjakelly 08/12/2012 at 3:26 pm

      Hi Melissa, you are most welcome. Thank you so much. Australia has a support group for ED and it is called ozED and there is an online page where you can get in touch with the president. There are members in every state and QLD has many ED children. Not sure if there is anyone in Darwin but I am sure we can find that out for you. Lately I have heard of children calling themselves the new X-men. They all have ED as well. Mine are fortunate because they have each other and are ‘normal’ to each other. Our biggest mantra is, everyone is different and everyone has something very special. In the boys case, they have special teeth and other ‘powers’ (like getting air-conditioning in class) and other children have freckles, grins and smelly shoes as their special powers. Hang in there and stay positive and it will all work out xxx I’m in Australia as well, northern NSW, so if you want to keep in touch, you are most welcome to do so. Nice to meet you xx

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