Written by: Wesley Sanders, Outreach Coordinator
Starting the journey of parenthood can be intimidating. There's a lot to learn and quite a bit of mystery about what to expect. But when Suzanne learned of her son Dominick’s unilateral cleft lip and palate diagnosis during an ultrasound and wanted to prepare her older son for his baby brother's diagnosis, she was faced with a lack of age-appropriate literature to help her do so.
"When we first got my son's diagnosis at the 19 weeks ultrasound, we searched for resources to talk to our other son, Nicholas, about cleft. We were only able to find one kid's book at this time that gave a clear and childlike explanation for him of what his sibling would look like." This need led Suzanne to write Sharing Smiles, a children's storybook about a timeline of the first year of life for most babies born with cleft lip and palate, educating those who are unfamiliar and a sweet brotherly bond between Nicholas and Dominick.
"I want people to understand the complexity of cleft lip and palate. So many people assume it's one surgery (lip repair), and that's the end of it. In Sharing Smiles, we talk about the difficulties with feeding, lip, and palate being impacted, and all of the specialists our kids have to work with."
After her career as a special education teacher in a self-contained classroom working with students with severe and profound disabilities, Suzanne landed a job as a Cleft and Craniofacial Coordinator for a hospital. She became responsible for aiding parents in circumstances like her own. Suzanne said this new opportunity was a 'God thing' after several challenging years of teaching during COVID-19, her son’s birth, numerous doctor appointments to repair his cleft and palate, and a death in her family.
"Dominick's plastic surgeon reached out to me on my summer break and asked if I wanted a career change and would consider interviewing for the job. I cried! It was perfect timing, and I instantly knew it was something I would want to do. I have always considered myself a huge advocate for those with high needs. Even though I don't have a medical background, I know how to work with families, be an advocate, and I am organized!"
Suzanne said she's always dreamed of a career that enabled her to "teach," advocate, and aid in families' journeys with navigating cleft.
"I have learned SO much in this job. I am able to go into the OR and watch surgeries. I get to see the amazing work our providers do for our kids in a very different way. That has been a lot of fun. I truly love working with the families. It's rewarding to be able to empathize with them when they are struggling and be able to give them thoughts, solutions and a listening ear when they need it. They often ask me how I did something for Dominick or want me to help them through a certain part of their journey. It's rewarding to know we are all in this same experience together".
Suzanne’s role as a Cleft & Craniofacial Coordinator is being responsible for assisting families in understanding, coordinating, and implementing treatment plans. She is there for families to commiserate, and there for families to celebrate milestones.
