Children's Hospital Colorado

Cleft Lip and Palate Resources

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A cleft lip or palate diagnosis can seem overwhelming at first. Over the years, the condition has been very well documented, and doctors and surgeons have made great strides in the care they can provide. Treatment options have expanded, and the overall quality of treatment has greatly improved.

We provide resources, services and information on organizations that can help you and your family learn more about cleft lip and cleft palate and understand and manage the condition better.

Photographs of our patients before and after cleft lip and/or cleft palate surgery

Cleft lip or cleft palate are conditions that can require several surgeries to repair. For many parents and families, it’s hard to visualize what the final result might look like. These before and after pictures show children that our surgeons have performed cleft lip and/or cleft palate repair on. Each diagnosis is unique, and results may vary, but these photos represent some of the repairs our surgeons can perform.

Support for parents and families

Support groups can be very helpful for getting advice on the challenges you or your child with cleft lip or cleft palate might face. It can be especially helpful to speak with someone who can share their experiences and pass on what they have learned.

  • Face-to-Face Colorado knows that the best resource for families affected by cleft conditions is other families. Their events and programs are developed by individuals with clefts, their family and friends. Face-to-Face is dedicated to ensuring that all services are open and welcoming to everyone.
  • Peak Parenting Center is a Colorado Springs-based organization that helps parents advocate for their kids in school.
  • Children’s Craniofacial Association is a non-profit organization based in Dallas that provides educational information regarding craniofacial conditions and networking support for families.
  • About Face is a Canadian organization that provides resources and educational programs as well as emotional, peer and social support to individuals of all ages with facial differences and their families. They seek to increase public understanding and acceptance of people living with facial differences through public awareness.
  • Families U.S.A. is a national nonprofit, nonpartisan organization dedicated to the high-quality, affordable health care for all Americans. The website includes information on federal managed care legislation and a state-by-state guide to managed care issues and policies. Check their extensive page of links for a list of other advocacy organizations.
  • Family Voices is a national grassroots organization comprised of families and professionals who care for children with special health care needs. The website provides information on the Children's Health Insurance Program (CHIP), managed care, SSI benefits, Medicaid and a brief summary of activities in each state.
  • The mission of the Patient Advocate Foundation is to educate patients about managed care, public policy issues that may affect coverage and how to clarify the terms of an insurance policy. The organization also provides legal intervention services. The website presents information in English and Spanish.
  • SNAP Medical Insurance Empowerment Program advisors work with parents on creative ways to approach insurance companies for authorizations or reimbursements regarding medical care for children with special healthcare needs. Families must have private insurance and fees are charged on a sliding scale basis.

Suggested reading

Cleft lip and cleft palate are well-documented conditions and there is a lot of helpful literature available for children and families. Some of our recommendations include:

  • “A Parent's Guide to Cleft Lip and Palate,” by Karlind Moller, Clark Starr and Sylvia Johnson.
  • “As You Get Older: Information for Teens Born with Cleft Lip and Palate,” by Cleft Palate Foundation.
  • “Children with Facial Difference: A Parent's Guide,” by Hope Charkins.
  • “Cleft Talk for Kids,” by Melissa Johnston-Burnham; an interactive, child-friendly book explaining cleft lip and cleft palate conditions.
  • “The Body Image Workbook,” by Thomas F. Cash; helps kids fight negative body images and create a healthier relationship with themselves.
  • “Your Cleft-Affected Child: The Complete Book of Information, Resources, and Hope,” by Carrie Gruman-Trinkner and Blaise Winter.
  • "Wonder,” by R.J. Palacio; born with a facial deformity that initially prevented his attendance at public school, August "Auggie" Pullman enters the fifth grade at Beecher Prep and struggles with the dynamics of being both new and different in this tale about acceptance, self-esteem and the transformative power of human kindness. Available in English and Spanish.
  • “We Are All Wonders” by R. J. Palacio; parents and educators can introduce the importance of choosing kindness to younger readers with this gorgeous picture book, featuring Auggie and Daisy on an original adventure. Available in English and Spanish.