Growing Up with Cleft:
A Resource for Kids, Teens & Young Adults

Growing up with a cleft comes with experiences that aren't always talked about. Some questions are practical. Others are personal. Some don't even get asked because they're hard to put into words.

This is a place to find information, explore questions, and hear directly from teens and young adults about their experiences growing up with cleft. You'll also find perspectives from families and professionals who have been part of the journey along the way.

How This Resource Came Together

This resource started with an idea: to create a space where teens and young adults growing up with cleft could hear more directly from people who have been there, ask the questions that don't always come up in a clinic visit, and share the experiences that can be hard to find in traditional cleft resources.

As I started putting the idea out into our community, one of our teens reached out with an enthusiasm that helped move the project forward. She wanted young people with cleft to have this kind of space and wanted to help create it. Since then, she has become a true collaborator, sharing her own experiences, answering questions thoughtfully, and helping guide what this space could and should become.

In mid-2026, we learned that our clinic would be closing. While the clinic is coming to an end, we don't want this resource, or the voices behind it, to disappear with it. This page lives here, on our own site, separate from the clinic, so it isn't going anywhere. Through the end of the year, we'll continue inviting teens and young adults from our community to share their experiences, perspectives, questions, and advice so that others can benefit from what they've learned along the way. The young people we've had the privilege of working with have continually impressed and inspired us with their insight, honesty, resilience, and willingness to help others. Our hope is to preserve some of that here, creating a resource shaped not just for young people growing up with cleft, but with them.

Voices from the Cleft Community

Real experiences, advice, and perspectives from people who have been there.

There isn't one way to experience growing up with cleft. Here, teens and young adults share their own perspectives on questions that can come up along the way, from surgeries and school to friendships, confidence, and figuring out how cleft fits into their lives. These are their experiences, in their own words.

  • 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.

  • 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

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

Questions We're Still Exploring

We'd love to hear more voices.

  • Was there anything a doctor, speech therapist, teacher, friend, or family member did that made you feel especially understood or supported?

  • Was there ever a moment when you realized your cleft had shaped you in a positive way?

  • If you could give one piece of advice to a younger child with a cleft, what would it be?

  • Is there something you wish people without a cleft understood about the experience?

Want to Add Your Voice or Ask a Question?

This page keeps growing because people like you are willing to share. If you'd like to answer one of the questions above, tell us something we haven't thought to ask, or ask and answer a question of your own, we'd love to hear from you. Share your name, your first name only, or stay anonymous, whatever feels right to you. If you don't see your question answered yet, let us know; it may help someone else, too.

Everything shared here goes directly to a private email. Nothing is posted automatically. If you've said it's okay to share, your story will be reviewed and de-identified (or credited however you prefer) before it's ever added to the page. Your email is never published or shared.