FCPA Featured Patient Dara Beliveau

Dara Beliveau

FCPA Featured Patient – September 2022

Growing up with a facial difference has been interesting. Of course, there have been many surgeries, but despite that, I have accomplished quite a lot. For example, I have been an ice skater since I was four and have competed at many levels—even a national competition. I have also earned straight A’s in school because, when I grow up, I want to be a pediatric craniofacial surgeon so that I can help kids like me. Some of my other hobbies include playing the ukulele and singing, baking/cooking, and art.

“I have also earned straight A’s in school because, when I grow up, I want to be a pediatric craniofacial surgeon so that I can help kids like me.”

—Dara Beliveau

The main challenge I have experienced because of my facial difference has been getting used to everything after surgeries and procedures. However, I have learned through all of this to stay positive because that helps so much, and it would be my advice for younger children. Just try to maintain a positive outlook and see the glass as half full. The only other small challenge has been knowing what to answer when people ask me what I was born with. Now that I know how to answer, it doesn’t bother me as much, and everything is fine.

Silvana’s Story (Dara’s Mother)

Dara’s journey has taught us so much about limits that can be pushed, resilience, patience, strength, and family.

The Diagnosis

Dara’s journey has taught us so much about limits that can be pushed, resilience, patience, strength, and family.

I first learned by week 16 into my pregnancy that Dara would have a bilateral cleft lip and palate, and I will always remember that day. Although I was also born with a cleft palate, I never considered that my child would inherit it. Time stopped the moment the doctor told us because I did not know what to believe or what that even meant. My husband responded to the news by saying it was not a big deal, we would fix it. His strength and positivity meant so much to me because, even today, I blame myself for her diagnosis.

That day an angel was put into our path: Dr. Michael Gallant of All Children’s Hospital in St. Petersburg, Florida. We met with Dr. Gallant prior to Dara’s birth, and I am so grateful that we did. Over the years, he has meant so much to our family and has been with us from the moment we received her diagnosis. He and his team showed us examples of children with similar diagnoses and explained her likely timeline and the procedures she might need. And although it might seem overwhelming and terrifying, it helped me understand that Dara’s condition really wasn’t such a big deal and actually could be fixed, exactly like my positive husband said.

Birth and First Surgery

After she was born, Dr. Gallant and his team provided constant support, advising us on how to feed her, what to expect, and how to build patience on the long road ahead. They also recommended that we try to enjoy every minute of it. After her first surgery, when she was 10 weeks old, I realized that I no longer wanted time to fly by quickly, and just like the team had told me, I found that I wanted to enjoy my baby at every moment of her journey.

“I would advise you to trust your baby because he or she will be strong, much stronger than you. And remember my husband’s words: it is not a big deal; it will be fixed.”

Silvana Beliveau

The most difficult surgery for me was her first. She looked so small when I put her in Dr. Gallant’s arms to carry off to surgery. Afterward, and before we could see her, Dr. Gallant spoke with us privately and showed us her “before” and “after” photos. My hand instinctively touched the “before” photo because that was the baby I knew and loved. He took my hand and placed it gently over the “after” picture, saying, “It is the same baby, mommy. I just made her better.”

Development

Her diagnosis had no impact on her development. At two, she took a few months of speech therapy, and we worked with a nutritionist for her feeding. However, for each of those steps, the Cleft team was there to help and coach us through. In all honesty, the whole team has been angels sent to help us.

Lessons Learned

As terrifying as this experience seemed in the beginning, on Dara’s journey I also learned how strong my child was and how resilient. Following every surgery, I would feel scared and stare at her for hours as she tried to smile through the pain and discomfort. She is my hero, the strongest and most positive person I know, and she is my inspiration. She has always been the one to grab my hand and tell me it was going to be okay. And she will be the one smiling even when life is hard and painful.

Family Support

Although we received incredible support from the cleft-palate team at All Children’s Hospital, the pillar of strength for us has been our small family of four. We stay united to weather any storm coming our way. Her little brother is the sweetest, most caring, and most selfless little man you will meet. His support to her and me has been incredible. Her dad is the positive pillar, the core of our support system.

My advice to parents who have children with facial differences is to ask questions, allow your cleft palate team to help you, take their advice, and consider them part of your family. They certainly view you that way. I would advise you to trust your baby because he or she will be strong, much stronger than you. And remember my husband’s words: it is not a big deal; it will be fixed.