Sharing Smiles -Our Story

My second son, Dominick, was born on June 12, 2020 with a unilateral cleft lip and palate at Brenner’s Children’s Hospital in Winston-Salem, NC. This was not a surprise to us. We had gotten his cleft lip and palate diagnosis at our 19 week ultrasound. Typically a palate is hard to see on diagnosis, but his cleft was wide so they were able to “confirm” this on multiple occasions. My husband, Nick, and I were stunned at our ultrasound. Earlier that morning, my dad had been diagnosed with Stage 4 cancer. Inoperable. Incurable. Cancer. The cleft was the second blow of the day and at that time, I thought, it was the absolute worst day of my life. Cancer. Cleft. Cry. Cancer. Cleft. Cry. Rinse. Repeat. For the next several months.

When Dominick finally got here, I thought I was prepared for his cleft. I had read and researched. We had talked to his surgeon and I had dug deeper in my family history of cleft. I was not prepared. In the delivery room it felt like there were 100 people watching me. Waiting for my baby who could have all these complications. I pushed and turned and lifted legs and breathed. At 10:37 am, my baby arrived. The doctor’s pulled him out and I could see the tears in Nick’s eyes. They weren’t the same tears as when Nicholas was born. A gut punch and guilt you never wish to feel as a parent. “It’s a boy,” he said in between his sobs. A boy. I was grateful. For so many reasons, but mostly because of his cleft and the cruel world that he would face for the rest of his life. Boys dig scars.

They were cleaning him up and I still had not seen his face. “I can’t see him.” Nothing. “I cannot see him, turn him around so I can see him.” And so they did. Typing this still brings me so much grief. Thinking about how sad I was to see my babies cleft in those first moments. It’s a guilt that I never wish for him to know and something I always wish I could take back. To flood your brain with assumptions about how hard his life is going to be and question how they will fix this so he never feels an ounce of pain or hurt because he is different. Nick and I held him and each other for several minutes. We cried hard, ugly tears. We looked at his large gap and examined him closely. The tears slowed and soon it all faded away. It’s so difficult to put into words until you have experienced it, but it’s almost like the cleft just went away. It just was what it was. His plastic surgeon came in and we started taping his lip right away. We got him started on the Dr. Brown’s specialty feeding system and he ate like a champ, even with his wide cleft.

Dominick was a pandemic baby, so we lived in a bubble for quite a while. We masked and went to all our hospital visits. We started the Nasoalveolar Molding (NAM), had weekly adjustments with his pediatric dentist, and continued that for the first 3 months of his life up until his first surgery. We found out he had a mild to moderate hearing loss and started using a Baha, which is a Cochlear softband hearing system.

His first surgery was on October 2, 2020. Dr. Runyan repaired his cleft lip. My dad passed away on November 23, 2020 after one heck of a fight. Dominick had his palate repair and first set of ear tubes on May 11, 2021. At that point we had gotten him off of all bottles except his night time one. We were in the hospital for 3 days with this surgery. It was a rough recovery for him and he refused to eat. In September, 2021 he had his second set of ear tubes because his first set became compromised with bacteria.

Fast forward to today, we are still trying to embrace transformation. We are watching our boy explode with language, well above his age level, but become frustrated because his articulation continues to be an issue and his speech is 10% intelligible to unfamiliar listeners. We are at the ENT every few months because his ears continue to drain nasty bacteria, and we still use his Baha to help with his hearing loss during those times. I am in a new career as the Cleft and Craniofacial Coordinator at Brenner’s Children’s Hospital. I am a published author of a cleft children’s book called “Sharing Smiles.” Nicholas is about to start first grade. We have a new puppy named Hero that the boys absolutely love. I miss my dad every single day.

I felt like my world was crumbling around me on that day in January back in 2020. Since then I have met people from around the world who are on the same journey as us. I’ve joined the Cleft Community Advisory Council (CCAC) with Smile Train and I’m about to emcee my 2nd Cleft Con event in New York City in July. I’ve found amazing products like Cozeecoo, carefully created to make our babies lives easier during and after surgeries.

We still have mountains to climb on Dominick’s cleft journey and I miss his first smile with each passing day. But I am incredibly grateful for this life we have been given. I would never have chosen it but after all this time I know that it chose me for a reason. I was meant to be Dominick’s mama and a Coordinator at the hospital for all of these families that have kids born with a cleft lip and palate. Everything around us has changed so much in the last few years that sometimes I don’t recognize myself, but when I look in that mirror I am coming to realize that I am more “me” than I have ever been before.

-Suzanne Santomieri
Cleft Mom & Author of Sharing Smiles
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