Our Journey as New Cleft Parents: The Beginning
Our Journey as New Cleft Parents: The Beginning
Becoming a cleft mom was something I never expected, and it has completely reshaped our parenting journey. I still remember the day I received the phone call after our anatomy ultrasound, a call that would change so much about how I envisioned our life. They told us our daughter would be born with a cleft, though at that time we didn’t know whether it was a cleft lip, palate, or both. The uncertainty was overwhelming, and I immediately dove into researching everything I could. The more I learned, the more questions I had. But I knew one thing for certain—we would take it one step at a time.
After what felt like endless research and waiting, our beautiful daughter was born with a bilateral cleft lip and complete palate. We were incredibly fortunate to live near a well-known children’s hospital with an experienced cleft team, which has been such a blessing. Since her birth, our days have been filled with doctor appointments, consultations, and preparing for her big craniofacial board meeting coming up later this week.
Facing Challenges: Feeding Our Cleft Baby
One of the biggest challenges we’ve faced has been feeding. Our daughter isn’t able to breastfeed due to her cleft palate, so I made the decision to exclusively pump. She is fed using a special bottle designed specifically for babies with clefts. This journey of exclusive pumping has been exhausting but also rewarding. It feels like a small yet powerful way to provide her with what she needs while navigating a complex situation.
In the first month of her life, something completely unexpected happened—our daughter began losing teeth. Because these teeth had no roots, they simply fell out, and I had no idea that this could even happen. It was a moment that left us stunned, yet it’s now become one of the many unique elements of her story.
Finding Community Through the Cleft Family
Throughout this journey, one of the things that has made the most difference is the community we’ve found. Sharing our daughter’s cleft journey online has connected us with other members of the cleft family, and their support has been truly incredible. It’s amazing how the internet can bring together people from different parts of the world who have walked similar paths. I’ve heard countless stories from other cleft parents, and it has made me feel both inspired and less alone. There is a strength that comes from knowing others have faced these challenges and not only survived but thrived.
I was also worried, as any parent might be, about how others would react to her looking different. We wondered if we would have to deal with judgment or cruel comments. So far, we’ve been fortunate to have a mostly positive response from those we’ve met. I was surprised at how many people either knew someone or were themselves born with a cleft. It’s been a learning experience not just for us, but for those around us as well. People’s kindness has made this journey a little bit easier.
Taking It One Step at a Time
Our journey as new cleft parents is just beginning. There are many more appointments, surgeries, and milestones ahead. We are taking it one step at a time, focusing on what our daughter needs in each moment. This path is one that comes with challenges, but it is also filled with resilience, love, and community.
This post is the first of a series, where I’ll share more about our experiences, from preparing for surgery to navigating the ups and downs of raising a child with a cleft lip and palate. I hope to provide insight, support, and perhaps a bit of comfort to other cleft parents who may be in the same shoes. And for those who are just curious, I invite you to follow along as we navigate this unique and beautiful journey.
Thank you for being here, for reading, and for being a part of our cleft community. Whether you’re a parent, a friend, or someone wanting to understand more, your support means everything.