Please note that Face-to-Face Colorado does not endorse any medical advice, provider, or cleft clinic.
Condition information
Suggested reading
- “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.
Support for parents and families
- Family Resources from ACPA Family Services, including information on feeding your baby, treatment options, speech therapy, life stages, and community support,
- 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 emotional, peer and social support, resources and educational programs 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.
- Cleft Advocate is a parent-run website that offers advice and sample letters for fighting cleft-specific insurance denials. General educational resources are also available.
- Families U.S.A. is a national nonprofit, nonpartisan organization dedicated to the achievement of 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.
- Peak Parenting Center is a Colorado Springs based organization that helps parents advocate for their kids in school.
- SNAP Medical Insurance Empowerment Program is where advisors work with individually with parents to creatively determine how to approach their insurance companies for authorizations or reimbursements regarding medical care for children with special health care needs. Families must have private insurance (not Medicaid) and fees are charged on a sliding scale basis.
Home care instructions for after surgery
Please note that Face-to-Face Colorado does not endorse any medical advice, provider, or cleft clinic. These are merely for reference. Please follow your physicians plan for care after surgery.
