By Beth Tascione
A great team makes all the difference. That’s true in sports, business, and especially when it comes to medical care. And thanks to the National Foundation for Ectodermal Dysplasias (NFED) we have a great team supporting our daughter’s dental care.
Building a Strong Foundation: Maddie’s Diagnosis and Early Care
Maddie was diagnosed at age two with ectodermal dysplasia. One of the main ways Maddie’s ectodermal dysplasia expresses itself is through her teeth. While she has most of her baby teeth, they are widely spaced and conical in shape. Panoramic x-rays have revealed that she has only two adult teeth, which are also conical and very widely spaced. Because of the lack of adult teeth, her baby teeth would not be pushed out.
For most of her young life, Maddie didn’t want to do anything to her teeth. While she was curious about her own different-looking teeth and whether or not the tooth fairy would visit, she was hesitant to try any of the interventions like bonding or dentures.
And, honestly since she had most of her baby teeth, and they were healthy teeth, we weren’t pushing to change anything either, especially since she seemed so content. Maddie was able to eat and speak with relative ease. Our goal was to help her keep those baby teeth healthy, so that her jaw would remain strong for what we knew was down the line for her – dental implants.
This was the plan, until it wasn’t.
Maddie’s Desire for Change Sparks Action
As Maddie finished fifth grade, graduating from her elementary school and preparing to enter middle school, she expressed a desire to change her smile. I remember sitting around the kitchen table when she first brought it up, and we talked through some options. The first step, we figured, would be to talk with Maddie’s dentist and possibly a prosthodontist to see what we could do to give Maddie the smile she was looking for.
We found a prosthodontist in our area through Maddie’s dentist. While he was super nice, neither my husband, Jonathan, nor I felt at ease with the plan he came up with. He wanted to shave down Maddie’s two adult top front teeth so that he could squeeze a partial denture in between them to make her teeth look more typical.
Having attended NFED conferences in the past, the words of their dental specialists rang in our ears: do as little as possible to change the tooth structure. With this thought in mind, the idea of shaving down her only two adult teeth felt precarious.
Finding the Right Path
Without a lot of other options, we turned to the NFED. Kelley Atchison immediately connected us with one of the members of their Scientific Advisory Council, Dr. Beau Meyer, a pediatric dentist. He, along with Kelley, met with Jonathan, Maddie and me on Zoom to discuss the proposed plan and to see if there might be another option. Since Dr. Beau did not live in our area, we shared with him all of Maddie’s x-rays.
After examining them, he thought another approach might be less invasive and possibly work better to give Maddie the smile she wanted. He put us in contact with a former student of his, Dr. Kristin Sweeney, who had her dental practice two hours from where we lived.
Like Dr. Beau, she was enormously kind and generous with her time. We met initially on Zoom to talk about Dr. Beau’s idea for giving Maddie the smile she wanted, and to see when we might be able to meet for a consultation.
Dr. Sweeney took care of helping us make the appointment, as well as putting us in contact with an orthodontist that she thought would be a good fit for our family. She even reached out to one of her previous teachers, Dr. Aram Kim, a wonderful prosthodontist to be part of our care team. Before we knew it, we had all the players in place and all the appointments set up.
“I was grateful to be involved in Maddie’s care. I met the parents via Zoom and I learned about their dental experiences for Maddie to date. After that conversation, I reached out to Dr. Sweeny, who I taught while she was in residency. I explained Maddie’s story and clinical presentation. Dr. Sweeney asked a lot of good questions, and together we developed a few options that she felt comfortable leading. About a year and a half later, Beth found me at the NFED Family Conference and shared an update that brought me to tears. I was so happy for Maddie that A) she was able to get connected to Dr. Sweeney, and B) that the plan was working. She smiled in her school pictures! To be a part of that, wow. I felt honored. And all I did was listen, apply some creativity, and make a connection. Dr. Sweeney and her team did the rest!” – Beau Meyer, D.D.S., M.P.H., NFED Scientific Advisory Council
Maddie’s Smile Transformation in Action
The summer before she entered sixth grade, Maddie had her two top front teeth bonded by Dr. Sweeney so that they appeared more typical in shape. She then went to the orthodontist, Dr. Steve Reichheld, to be fitted for Invisalign braces. These would move Maddie’s teeth very slowly, so as not to compromise too much the integrity of Maddie’s baby teeth, while closing the gap between her upper two front teeth.
The Invisalign braces also allowed tooth-like material to be placed in them, which would fill in some of the gaps between her teeth. When Maddie entered into sixth grade, she felt super happy with her new in-progress smile, so much so that in her sixth-grade picture she shared a very toothy smile – the first ever!
Maddie has been amazing over the past year, wearing and caring for her Invisalign braces. She also has had a frenectomy and a gingivectomy, two oral-surgical procedures, which she handled like a pro.
She has completed the orthodonture part of her care and is wearing Invisalign retainers, and is getting ready to be fitted for a partial denture. We’ve recently met with Dr. Kim, the prosthodontist on Maddie’s care team, and we are figuring out the best way to fit the denture so as to minimize any unneeded wear and tear on her baby teeth.
Looking Ahead: Confidence in the Journey Toward Implants
While this step is taking a little longer, we are so grateful for the thoughtfulness of our doctors and appreciate their willingness to communicate with each other to figure out the best plan for Maddie. Regardless of how long this part might take, Maddie is super happy with her new smile!
And while we know implants are on the horizon, once Maddie is a bit older, we all feel incredibly confident in the doctors that are on Team Maddie to guide us.
The Power of the NFED and a Thoughtful Care Team
What initially felt overwhelming became more manageable with the invaluable guidance of the NFED and its network of amazing doctors.
Beth Tascione is a guest blog writer for the National Foundation for Ectodermal Dysplasias. She and her husband, Jonathan, live in Massachusetts with their daughter, Maddie.
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Maddie your smile is so beautiful! It is the prettiest thing you wear besides your smiling eyes. I am so happy for you and the outcome you have achieved so far! I am a woman that was born way before you and did not have the benefit from the abilities that the dental communities and others have given you now! I was treated very differently and it gives me great pleasure to see that times have changed!
Hi Kathleen,
Thank you for reading our blog post and for your kind words! It’s heartwarming to hear your support and appreciation for Maddie’s journey. Stories like yours remind us how important continued awareness and innovation are.
Thank you for your note Kathleen. I’m Maddie’s parent, Beth. I’m sorry you did not have these treatments available to you. But I thank you for reaching out, for sharing a bit of your story, and for offering your kind words to Maddie. Be well!