Patient and Family Education

22q11.2-Related Disorders (PDF) (Spanish)
A handout from Seattle Children’s explaining what these disorders are and how they are diagnosed and treated.

22q11.2 Deletion Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

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.

Contact the Craniofacial Center to learn more about 22q11.2-related disorders.

Apert Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Apert.org
This site is sponsored by parents of children with Apert syndrome. It has links to clinical information and to personal webpages about families and their experiences 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 agony families experience as they deal with medical complexity while falling in love with their child.

Contact the Craniofacial Center to learn more about Apert syndrome.

Auriculocondylar Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Auriculocondylar Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Auriculocondylar Syndrome (Genetic and Rare Diseases Information Center)
Causes, symptoms and guidance about choosing healthcare providers with the right expertise for your child.

Beckwith-Wiedemann Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Beckwith-Wiedemann Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for Beckwith-Wiedemann syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Beckwith-Wiedemann Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Blepharophimosis, Ptosis, and Epicanthus Inversus Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Blepharophimosis, Ptosis, and Epicanthus Inversus Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for this syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Branchio Ocular Facial Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Branchio-oculo-facial Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Branchioocularfacial Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for branchioocularfacial syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Branchiootorenal/Branchiootic Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Branchiootorenal Spectrum Disorder (GeneReviews)
Diagnosis, management and genetic counseling for branchiootorenal spectrum disorder. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Branchiootorenal Spectrum Disorders (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Carpenter Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine

Carpenter Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Carpenter Syndrome (Genetic and Rare Diseases Information Center)
Causes, symptoms and guidance about choosing healthcare providers with the right expertise for your child.

CHD7 Disorder (GeneReviews)
Diagnosis, management and genetic counseling for CHARGE syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

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.

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.

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

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. We have a related PDF: Cleft Lip and Palate Feeding Instructions (Spanish) (Ukrainian).

Cleft Lip and Nose Repair: Care After Surgery (PDF) (Somali) (Spanish)
What to expect and how to care for your child after they get home from having surgery for their cleft lip and nose.

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

Cleft Palate Repair: Care After Surgery (PDF) (Russian) (Somali) (Spanish) (Vietnamese)
What to expect and how to care for your child after they get home from having surgery for their cleft palate.

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 for a cleft palate.

Starting Solid Foods for Babies With Cleft Palate (PDF) (Spanish)
Guidelines for feeding your baby with cleft palate, including when and how to start giving them solid foods.

Transition to Adult Care: Cleft Lip and Cleft Palate in Your Family (PDF) (Spanish)
Information to help families learn about the risk that clefting will happen again in their family.

Pre-Surgical Molding: For Infants With Cleft Lip and Palate (PDF) (Spanish)
Questions and answers about options to move the lip and nose before surgery for cleft lip and palate.

Understanding Cleft Lip & Palate: Guide for New Parents (Foundation of Faces for Children)
Videos of candid conversations with parents are interwoven with insightful information from craniofacial experts about cleft lip and palate. Available in English and Spanish.

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

Cleidocranial Dysplasia (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Cleidocranial Dysplasia (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Cleidocranial Dysplasia Spectrum Disorder (GeneReviews)
Diagnosis, management and genetic counseling for cleidocranial dysplasia. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Craniofacial Microsomia (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

CARE: Understanding Craniofacial Microsomia
CARE is a group that brings together healthcare providers, researchers and advocates, as well as people with craniofacial microsomia and their families.

Contact the Craniofacial Center to learn more about craniofacial microsomia.

Contact the Craniofacial Center to learn more about craniosynostosis.

These videos from Seattle Children’s 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
Learn about 2 treatment options for sagittal synostosis (open cranial remodeling and endoscopic release) and how the craniofacial team at Seattle Children’s partners with your family to make the choice that is best for your baby.

Fronto-orbital Advancement for Metopic and Unilateral Coronal Synostosis
Learn about treatment for metopic and unilateral coronal synostosis. The surgery is performed by a pediatric plastic surgeon trained in craniofacial surgery and a pediatric neurosurgeon

Crouzon Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Crouzon Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Contact the Craniofacial Center to learn more about Crouzon syndrome.

See resources for 22q.11.2-related disorders.

Cleft Lip/Palate-Ectodermal Dysplasia Syndrome (Genetic and Rare Diseases Information Center)
Causes, symptoms and guidance about choosing healthcare providers with the right expertise for your child.

Ectrodactyly Ectodermal Dysplasia Cleft Lip/Palate (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome (National Foundation for Ectodermal Dysplasias)

Signs, symptoms and causes. The foundation’s website also offers a range of information for affected families, such as how to cope with a diagnosis and connect with a community.

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. Children of any sex or gender 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.

myFace
Information, resources, support and community for people with craniofacial conditions and their families.

Recommended reading

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. It provides detailed descriptions of the experience of facial difference, as well as a child’s perspective on medical care.

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. It is an excellent description of a family’s joy and agony as they deal with medical complexity while falling in love with their child.

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.

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.

I’ve Just Seen a Face: A Practical and Emotional Guide for Parents of Children Born With Cleft Lip and Palate by Amy Mendillo, MPP
Authored by a health writer and mother of a child with a cleft, this guide is based on interviews with parents and healthcare providers, as well as medical literature. It includes stories, instructions and tips to help families with a range of topics, from bonding to making treatment decisions.

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

Fibrous Dysplasia (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Fibrous Dysplasia (National Institute of Arthritis and Musculoskeletal and Skin Diseases)

Details about what happens in this condition, symptoms, causes, diagnosis, treatment and resources.

Fibrous Dysplasia/McCune-Albright Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for fibrous dysplasia. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Fibrous Dysplasia/McCune-Albright Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Frontonasal Dysplasia (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Frontonasal Dysplasia (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Frontonasal Dysplasia (Genetic and Rare Diseases Information Center)
Causes, symptoms and guidance about choosing healthcare providers with the right expertise for your child.

Holoprosencephaly (GeneReviews)
Diagnosis, management and genetic counseling for holoprosencephaly. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Holoprosencephaly (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Nonsyndromic Holoprosencephaly (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Kabuki Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Kabuki Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for Kabuki syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Kabuki Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Mandibulofacial Dysostosis With Microcephaly (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Mandibulofacial Dysostosis With Microcephaly (GeneReviews)
Diagnosis, management and genetic counseling for mandibulofacial dysostosis with microcephaly. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Mandibulofacial Dysostosis-Microcephaly Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

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

Miller Syndrome (FACES)
A brief overview of the condition with links to more resources.

Miller Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Miller Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

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.

Nager Acrofacial Dysostosis (Genetic and Rare Diseases Information Center)
Causes, symptoms and guidance about choosing healthcare providers with the right expertise for your child.

Nager Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Nager Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

MID1-Related Opitz G/BBB Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for MID1-related Opitz G/BBB syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Opitz G/BBB Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

X-linked Opitz G/BBB Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Oral-Facial-Digital Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Oro-Facial-Digital Syndrome Type 1 (GeneReviews)
Diagnosis, management and genetic counseling for oro-facial-digital syndrome type 1. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Orofaciodigital Syndrome (National Organization for Rare Diseases)
Links to information about various types of oro-facial-digital syndrome — signs and symptoms, causes, diagnosis and therapies.

FLNA-Related Otopalatodigital Spectrum Disorders (GeneReviews)
Diagnosis, management and genetic counseling for oto-palato-digital spectrum disorders. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Otopalatodigital Syndrome Type 1 (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Otopalatodigital Syndrome Type 1 (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Otopalatodigital Syndrome Type 2 (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Facial Hemiatrophy (Genetic and Rare Diseases Information Center)
Causes, symptoms and guidance about choosing healthcare providers with the right expertise for your child.

Parry-Romberg Syndrome (American Society of Craniofacial Surgeons)
A brief overview of symptoms and treatment.

Parry Romberg Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Pfeiffer Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Pfeiffer Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

Contact the Craniofacial Center to learn more about Pfeiffer syndrome.

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

Contact the Craniofacial Center to learn more about positional plagiocephaly.

Isolated Pierre Robin Sequence (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Contact the Craniofacial Center to learn more about Robin sequence.

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

Stickler Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Stickler Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for Stickler syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Contact the Craniofacial Center to learn more about Stickler syndrome.

SALL1-Related Townes-Brocks Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for Townes-Brock syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

Townes-Brocks Syndrome (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Townes-Brocks Syndrome (National Organization for Rare Diseases)
Information about signs and symptoms, causes, diagnosis and therapies.

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 (MedlinePlus)
Information on this condition and the genes related to it. This online resource is from the U.S. National Library of Medicine.

Treacher Collins Syndrome (GeneReviews)
Diagnosis, management and genetic counseling for Treacher Collins syndrome. GeneReviews chapters are written by medical experts and are peer reviewed. They are produced by the University of Washington.

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

• 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)

Links to online ordering are provided for convenience and do not imply endorsement by Seattle Children’s.