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CLEFT CARE

Growing up with Cleft

A Resource for Kids, Teens & Young Adults

Every person’s experience with cleft is different. The reflections below come from Inia, now a high school senior from our clinic community, who helped shape this project. Her responses offer a personal perspective on growing up with cleft, from talking with others and navigating clinic visits to finding confidence and understanding her own story.

We’re grateful to Inia for helping us begin, and we welcome additional voices as this collection grows.

Voices from the Cleft Community

Experiences, advice, and perspectives from people who have been there.

Every person’s experience with cleft is different. The reflections below come from one young person from our clinic community who helped shape this project. Her responses offer a personal perspective on growing up with cleft, from talking with others and navigating clinic visits to finding confidence and understanding her own story.

We’re grateful to her for helping us begin, and we welcome additional voices as this collection grows.

Talking about cleft

  • When I was younger, I usually just told people I had a speech issue because that felt like the simplest explanation. As I've gotten older, I've become much more comfortable talking about my cleft. If someone I'm close with asks, or if someone is genuinely curious and respectful, I'm happy to explain what a cleft palate is and share more about my experience. I think the biggest change has been realizing that I get to choose when and with whom I share that part of my story.

How we feel as we grow

  • One moment when I felt especially proud was when I performed on stage as a singer for the first time. Singing had been a meaningful part of my journey because it helped me build confidence and appreciate how far I had come with my speech. Standing on stage, I was able to focus less on the challenges I had faced and more on what I was capable of achieving. It reminded me that my cleft was only one part of my story, not something that defined my abilities.

  • As I have gotten older, I have become much more comfortable with the fact that having a cleft is part of my story. When I was younger, I mostly saw it through individual experiences like speech therapy, clinic visits, orthodontist appointments, and ENT appointments. Now, I am able to step back and see the bigger picture of how those experiences shaped my resilience, confidence, and perspective. Instead of viewing my cleft only as something I had to overcome, I see it as an important part of my journey.

  • When I was younger and old enough to understand what my cleft meant, I remember asking my parents questions about what a cleft was and what it meant for me. I was curious about why I was born with it and how it affected different parts of my life. However, I was often more focused on what I could do to improve, whether that was through speech therapy, appointments, or practicing on my own. Looking back, I think my childhood mindset was less about questioning my cleft and more about learning how to navigate it.

  • I wish people without a cleft understood that sharing this part of someone’s story is a deeply personal experience and often requires a lot of trust. A cleft is not just a childhood experience or a series of medical appointments; it is a lifelong journey that can shape how someone sees themselves and the world. If someone chooses to open up about their experience, I hope others approach that conversation with empathy, respect, and genuine support. Being willing to listen and understand can make a meaningful difference.

  • One moment that made me reflect more on my cleft was when I had an assignment at school asking me to identify major life events that shaped who I am. As I thought through different experiences, I realized that graduating from speech therapy was one of those milestones. Until then, I had mostly viewed my cleft as something I needed to work on or manage through appointments and therapy. Recognizing speech therapy as a major part of my life made me think more deeply about how my cleft had influenced my growth and development.

  • I don't remember one specific conversation because it was always openly discussed within my immediate family. I always knew I had a cleft palate, and it was never treated like something that had to be hidden at home. At the same time, I felt like I had to keep it fairly private outside of my immediate family. I rarely talked about it with friends or extended family because I didn't want to be treated differently or have it become the first thing people associated with me. I think that sometimes made me feel a little disconnected from it. It was something I knew was part of me, but not something I openly talked about.

  • I think it would have been reassuring to hear that there isn't one "right" way to feel about having a cleft. Some days you don't think about it at all, while other days it feels much more significant, and both are completely normal. I also wish someone had emphasized earlier that confidence doesn't come from pretending your cleft doesn't exist. It comes from becoming comfortable with it being one part of your story, not the whole story.

Experiences with care

  • Clinic days became a regular part of growing up. They could be long, but I appreciated having a team that knew my history and genuinely cared about my progress. At the same time, constantly returning to the clinic sometimes made me feel like I didn't quite fit in with everyone else. There were periods where progress in speech therapy or other areas wasn't what we had hoped, and those moments could make me feel like there was something wrong with me or that I wasn't improving enough. Looking back, I realize those feelings were a normal response to being in a medical system for so much of my childhood, but at the time they were difficult to separate from how I saw myself

A Few Questions to Get You Started

  • Has having a cleft shaped how you see yourself or other people?

  • What has someone said or done that helped you feel understood or supported (or not)?

  • Is there a time you wish someone had understood what you were going through? What would have helped?

  • What would you want a younger child with a cleft to know?

  • What do you wish people without a cleft understood about your experience?

Want to Add Your Voice or Ask a Question?

We’d love to hear from you.

You can share an experience, ask a question, or answer one of the prompts below if you’d like a place to start. A few sentences are plenty. No need to answer everything or make it sound polished.

We welcome different experiences. You don’t have to have advice or a positive story to share.

Nothing is posted automatically. Let us know in the form whether you’re comfortable having your response shared on this website. We may reach out if we have a question.

If you’re under 13, please ask a parent or guardian to submit on your behalf.

Nothing is posted automatically. If you give permission to share your response, we may publish it without contacting you first. We may make small edits for length or clarity while keeping your meaning. We won’t publish your email address.

If you’re under 18, please complete this with a parent or caregiver.

How This Resource Came Together

This project began with a wish to help young people growing up with cleft hear directly from others who have been there, including the questions and experiences that don’t always come up during a clinic visit. Inia, a teen from our clinic community, helped bring that idea to life by sharing her own experiences and helping shape what this space could become.

Although the Saint John’s Cleft Palate Center has closed, this resource is continuing here as part of the WE Neuropsychology Resource Hub. We’re building it for the families we’ve known through the Center and for other cleft families looking for understanding and connection. As more young people contribute their experiences, questions, and perspectives, we hope it will grow into a resource shaped both for and by the people it serves.

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