Patient and Family Education

Contact our Craniofacial Center to learn more about 22q11.2-related disorders or 22Q11.2-Related Disorders (PDF) (Spanish).

A Different Life: Growing Up Learning Disabled and Other Adventures by Quinn Bradlee
When he was 14, Bradlee was diagnosed with a type of 22q11.2-related disorder (velo-cardio-facial syndrome, VCFS), which can cause a variety of health and learning problems. Bradlee describes the challenges and joys of living “a different life” with disarming candor and humor.

22q11.2 Deletion Syndrome - Genetics Home Reference 
Information on 22q11.2 deletion syndrome and the genes related to this condition. This online resource is from the U.S. National Library of Medicine.

Contact our Craniofacial Center to learn more about Apert syndrome.

Apert Syndrome 
This site is sponsored by parents of children with Apert syndrome. It has links to clinical information and to personal web pages about families and their experience with Apert syndrome.

Babyface: A Story of Heart and Bones by Jeanne McDermott
This book presents a very moving story of a mother’s experience after the birth of her child, who was diagnosed with Apert syndrome. It describes the joy and the agony families experience as they deal with medical complexity while falling in love with their child.

Apert Syndrome - Genetics Home Reference 
Information on Apert syndrome and the genes related to this condition. This online resource is from the U.S. National Library of Medicine.

The CHARGE Syndrome Foundation
This foundation supports people with CHARGE syndrome and their families. The foundation promotes research. It also gathers, develops and distributes information about the syndrome.

CHARGE Syndrome – GeneReviews
Diagnosis, management and genetic counseling for CHARGE syndrome. GeneReviews are written by medical experts and are peer reviewed. They are produced by the National Center for Biotechnology.

Contact our Craniofacial Center to learn more about cleft lip and palate.

Cleft Feeding Instructions 
Tips from Seattle Children’s nurses on ways to feed your baby, plus bottles and other equipment to help when a baby has cleft lip or palate.

Understanding Cleft Lip & Palate: Guide for New Parents (free video)
Candid conversations with parents are interwoven with insightful information from craniofacial experts in this film about cleft lip and palate. Request a free video. Available in English and Spanish.

Cleft Lip and Palate: Critical Elements of Care
Cleft Lip and Palate: Critical Elements of Care was written for healthcare providers. Some families have found this helpful for understanding their child’s care.

Early Speech Development in Children with a Cleft Palate (PDF) Spanish
This handout from Seattle Children’s explains how speech develops in children who have a cleft palate. It has tips to help your child’s speech-making skills before and after surgery to repair a cleft palate.

American Cleft Palate – Craniofacial Association
An organization of healthcare professionals who treat children with cleft lip and palate. Resources include fact sheets about treatment, emotions and social issues. Available in English and Spanish.

Cleft Advocate 
Provides educational and support resources for families of children with a cleft. The website includes insurance and advocacy information and online family networking.

Contact our Craniofacial Center to learn more about craniofacial microsomia.

Craniofacial Microsomia – Genetics Home Reference 
Information on craniofacial microsomia and the genes related to this condition. This online resource is from the U.S. National Library of Medicine.

Craniofacial Microsomia – GeneReviews 
Diagnosis, management and genetic counseling for craniofacial microsomia. GeneReviews are written by medical experts and are peer reviewed. They are produced by the National Center for Biotechnology.

Contact our Craniofacial Center to learn more about craniosynostosis.

CranioKids 
This site was started by parents who wanted to learn from others who had experience with craniosynostosis. A supportive and fun place for families and friends to enjoy each other’s company.

These videos help explain craniosynostosis and treatment options and share other families’ experiences.

What is craniosynostosis?

Learn more about craniosynostosis.

A Diagnosis of Craniosynostosis

Watch this video to hear our experts discuss the diagnosis of craniosynostosis.

One Family’s Journey with Sagittal Craniosynostosis and Advice for Others

Hear about one family’s journey through sagittal craniosynostosis treatment at Seattle Children’s and get their advice for other families.

Craniosynostosis: What to Expect on Surgery Day

Learn what to expect on your child’s craniofacial surgery day, including what you can bring along.

Treatment Options for Sagittal Craniosynostosis

Dr. Richard Hopper shares information on two treatment options for sagittal synostosis: open cranial remodeling and endoscopic release. Learn how the craniofacial team at Seattle Children’s partners with families to make the choice that is best for your baby.

Fronto-orbital Advancement for Metopic and Unilateral Coronal Synostosis

Dr. Richard Hopper explains our recommended treatment for metopic and unilateral coronal synostosis. The surgery is performed by a pediatric plastic surgeon trained in craniofacial surgery and a pediatric neurosurgeon.

See resources for 22q.11.2-related disorders.

Accessing Services to Support Your Child’s Development: Infants and Toddlers (PDF) (Spanish)

Accessing Services to Support Your Child’s Development: School Age (PDF) (Spanish)

Websites

About Face International 
Provides information and support to people with facial differences and their families.

AmeriFace 
Seeks to increase public understanding through awareness programs and education. The group provides information and emotional support to people with facial differences and their families.

Center for Young Women’s Health, Boston Children’s Hospital 
This site offers friendly advice and practical tips for building a healthy body image and good self-esteem for teens with facial differences. Both females and males may find it helpful.

Changing Faces 
Information and support for people with conditions, marks or scars that affect their appearance. The organization also works to change public attitudes to make it easier to live with an unusual appearance.

Children’s Craniofacial Association 
Dedicated to improving the quality of life for people with facial differences and their families. The group addresses medical, financial, emotional, social and educational concerns.

FACES 
Provides information for families affected by craniofacial conditions. The site includes information about financial assistance.

Foundation for Faces of Children 
Clear, accurate information for people born with craniofacial conditions and their families. Resources include a video for families of children with clefts.

Recommended reading

Children with Facial Difference: A Parent’s Guide by Hope Charkins
The mother of a child with Treacher Collins syndrome, Charkins is also a clinical social worker. Her book is an excellent resource. It deals with concrete needs such as insurance. She also offers guidance about emotions and coping.

Babyface: A Story of Heart and Bones by Jeanne McDermott
This book presents a very moving story of a mother’s experience after the birth of her child with Apert syndrome. An excellent description of a family’s joy and the agony as they deal with medical complexity while falling in love with their child.

A Different Life: Growing Up Learning Disabled and Other Adventures by Quinn Bradlee
When he was 14, Bradlee was diagnosed with a 22q11.2-related disorder (velo-cardio-facial syndrome, VCFS). It can cause a wide range of physical ailments and learning disabilities. Bradlee describes the challenges and joys of living “a different life” with disarming candor and humor.

Autobiography of a Face by Lucy Grealy
This book details the personal experience of Grealy, who was treated for bony facial cancer in childhood and went on to have reconstructive facial surgery. Provides detailed descriptions of the experience of facial difference, as well as a child’s perspective on medical care.

Changing Faces: The Challenge of Facial Disfigurement by James Partridge
At age 19, James Partridge was badly burned in a car accident, including significant damage to his face. He now directs a counseling and advocacy organization in England known as Changing Faces. This very helpful volume describes his personal experience and professional work in this organization.

Craniofacial Conditions and Your Insurance 
This question-and-answer guide deals with challenging insurance-denial situations. It is prepared by Washington Appleseed and Foster Pepper.

A Guide to Understanding Facial Palsy (PDF) - Children’s Craniofacial Association
A resource for parents from the Children's Craniofacial Association.

Microtia (PDF) (Dari) (Japanese) (Spanish)
Information from Seattle Children’s about an underdeveloped outer ear (microtia) and how it might affect your child.

Moebius Syndrome Foundation 
Provides information, resources and support for children and adults with Moebius syndrome.

A Guide to Understanding Facial Palsy (PDF)
A resource for parents from the Children’s Craniofacial Association.

Contact our Craniofacial Center to learn more about positional plagiocephaly.

Torticollis (PDF) (Simplified Chinese) (Spanish)
Information from Seattle Children’s on what you can do if your baby’s head and neck are in an abnormal position (torticollis).

Contact our Craniofacial Center to learn more about Robin sequence.

Isolated Pierre Robin seqeuence
Information on Robin sequence and the genes related to this condition. This online resource is from the U.S. National Library of Medicine.

Contact our Craniofacial Center to learn more about Stickler syndrome.

Sticklers 
A website with medical information, networking, support, news and updates for families affected by Stickler syndrome.

Stickler Syndrome - Genetics Home Reference 
Information on Stickler syndrome and the genes related to this condition. This online resource is from the U.S. National Library of Medicine.

Stickler Syndrome - GeneReviews 
Diagnosis, management and genetic counseling for Stickler syndrome. GeneReviews are written by medical experts and are peer reviewed. They are produced by the National Center for Biotechnology.

Contact our Craniofacial Center to learn more about Treacher Collins syndrome.

Children with Facial Difference: A Parent’s Guide by Hope Charkins
The mother of a child with Treacher Collins syndrome, Charkins is also a clinical social worker. Her helpful book deals with concrete needs such as insurance. She also offers guidance about coping.

Treacher Collins Syndrome – GeneReviews 
Diagnosis, management and genetic counseling for Treacher Collins syndrome. GeneReviews are written by medical experts and are peer reviewed. They are produced by the National Center for Biotechnology.

Treacher Collins Syndrome – Genetics Home Reference 
Information on Treacher Collins syndrome and the genes related to this condition. This online resource is from the U.S. National Library of Medicine.

• All about VPI (Velopharyngeal Insufficiency) (video, 3:14)
• Evaluating VPD in Your Child (PDF) (Spanish)
• VPD (Velopharyngeal Dysfunction) (PDF) (Spanish)
• VPI (Velopharyngeal Insufficiency) (PDF) (Spanish)
• VPM (Velopharyngeal Mislearning) (PDF) (Spanish)