By Kelly Koch
In September 2017, my husband and I excitedly became parents. The blessing of a child suddenly became our reality, and we gladly accepted our new titles of “Mom and Dad.” As I began to see life through the tiny eyes of our new baby girl, Clara Gene, the way I interpreted the world changed.
It was no longer about me and my desires, but about Clara’s. I found myself continuously reflecting how my responses and reaction to any situation would affect her. Although becoming parents was brand new and filled with uncertainty, we were excited to live this life that God had blessed us with.
At delivery, Clara was strong, and she met the standards one would expect of a healthy baby. Her gross motor skills, fine motor skills, and intellect progressed normally. We generally had no concerns about her health.
In fact, she developed far more rapidly than we expected she would. She rolled over at three months, crawled at six, and walked at nine months! It wasn’t until her teeth began to erupt that we had any reason to be concerned or even question her health.
Something Was Different
As her baby teeth began to grow, we noticed they were all conical in shape and quite pointed. Her teeth looked much like a baby kitten’s or shark’s teeth. I wept so much upon this development, feeling sad and alone.
No one I knew had experienced the same thing, and my initial Google searches only led me to articles about syphilis.
When I posed questions on parent chat groups, no one had seen such a thing. When I asked my personal dentist about it, he also had no answers. It was at this point we sought out help from our family doctor.
Within a year of working with a pediatrician, a team of dental specialists, and a geneticist we received Clara’s diagnosis: odonto-onycho-dermal dysplasia (OODD).
Clara received two mutated copies of the WNT10A gene, one from Eric and one from myself. As my husband and I possess little to no symptoms ourselves, we were completely unaware of this being a possibility for Clara.
Now almost three years old, Clara still hasn’t developed her lateral incisors and only grew three out of her four second premolars. Overall, her teeth are quite gapped and small. Each tooth took six months to fully emerge which made the teething process prolonged and agonizing for her.
According to our pediatric dentist, we won’t know what this means for her adult teeth until the age of six or seven. At that age, they will be developed enough to detect properly in an x-ray. Generally speaking, children with Clara’s condition are missing most, if not all of their adult teeth. If they are lucky enough to get some adult teeth, these are often malformed too.
What This Means For Clara
We learned that if a child does not have adult teeth, their jaws are unable to develop properly without physical manipulation and intervention from a dental team. Clara might need dentures for most of her childhood until her jaw is fully developed, and she is also capable of receiving implants.
Thankfully, at this point in time, the only predominant symptom Clara has affects her teeth. Some of the other minor symptoms affect her hair, skin, and nails. Her hair is thin, but it is growing slowly.
She has eyebrows and eyelashes. She sweats profusely, and thus, her sweat glands have developed normally. The skin on her feet peels very easily. Her nails are brittle and concave, and we have yet to cut her toe nails.
I understand there are more difficult conditions in the world and Clara’s seem mostly aesthetic, but we know this path for our little girl isn’t going to be an easy one. It certainly hasn’t been an easy one to defend or process, even as her mom.
Will she have kids now? How will others treat her? Will she be bullied because of this? If she has dentures as a little child, what does this look like? Adults ask me if I’m part vampire. Certainly she will hear worse in school, right?
There was a lot of panic and worry at first. A lack of peace and a state of constant concern. I had to mourn the loss of “normal.”
I questioned for nearly a year if we should have more kids or not. I felt conflicted knowing I couldn’t look at Clara one day and tell her, “I didn’t want any more kids like you.”
Clara Is A Beautiful Rarity
Oh, have I been humbled. Apologies were written. Forgiveness was asked.
My empathy for others has grown tenfold, and I’ve found peace knowing that Clara, like me and everyone else, is a child of God.
She is fearfully and wonderfully made. God gave her the character to overcome and persevere. Wherever she goes, she goes with a force and she is strong. Her story is unique and special.
Her story has taught me to trust God even more which has tested my faith and made it stronger. I’m thankful for exactly the person Clara is and I wouldn’t change having her for anything.
NFED Community Connections
Today, we are thankful for the community at the National Foundation for Ectodermal Dysplasias (NFED). They offer the support we need to help bring peace in our times of worry. The relationships we have begun to establish have been loving and kind.
My husband and I welcome connection with others going through anything similar. Understand and know that we are not alone in this. Together, we can support each other, educate, and bring awareness about ectodermal dysplasia.
Kelly Koch is a guest blogger for the NFED. She lives in British Columbia with her husband, Eric, and their daughter, Clara.