Growing Up with Cleft:
A Resource for 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 page is a growing collection of information, questions, and real perspectives from teens, young adults, families, and members of our cleft team. We're building it one conversation at a time, and new content will continue to be added.

I Have a Question

Have a question? Chances are someone else has wondered the same thing.

This section will include both practical information and honest conversations about growing up with a cleft. Some topics will include a clinical perspective, while others will also include thoughts and experiences from teens and young adults who have been there.

What we're working on…

Information about:

  • Clinic and surgeries

  • Speech and communication

  • School and friendships

  • Confidence and self-image

  • Talking about your cleft

  • Dating and relationships

  • College and independence

I Want to Hear from Someone Who’s Been There

Sometimes it helps to hear from someone who's been through it.

This section will feature perspectives from teens and young adults sharing what they've learned, what surprised them, what they wish they'd known, and what helped along the way. No one person's experience represents everyone, but hearing different voices can remind us that we're not alone.

What we're working on...

Perspectives:

  • Advice I'd give my younger self

  • Things I worried about that turned out okay

  • What clinic was really like for me

  • Starting middle school

  • Starting high school

  • Heading to college

  • Things I wish people understood

I'm Looking for Help

Sometimes you're looking for information. Other times you're looking for support.

This section will include resources recommended by our cleft team, along with books, websites, organizations, and other tools that may be helpful for teens and young adults.

What we're working on...

Resources for:

  • Books and websites

  • School resources

  • Speech resources

  • Mental health resources

  • Transitioning to adult care

  • Additional support

How This Resource Is Being Built

This resource is currently being developed in collaboration with teens and young adults who have lived experience with cleft. The goal is to combine clinical expertise with lived experience so these pages feel both accurate and relatable. AI is also being used as one of several tools to help organize information, identify themes, and support the writing process but every page is carefully reviewed, edited, and approved before it is published.

As the project evolves, we hope to expand our Teen Advisory Team and continue adding new questions, topics, and perspectives that reflect the experiences of the cleft community.