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Cleft Lip and Palate - Critical Elements of Care
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Produced by The Center for Children with Special Health Needs
Children’s Hospital and Regional Medical Center, Seattle, WA

The Craniofacial Surgery Book
Dr. Larry Sargent's state-of-the-art surgical techniques


Abbe Flap

Dr. Robert Abbe, 1851 - 1928
The New York surgeon who first used lip-switch (Abbe) flap in bilateral cleft deformity.

Lip Reconstruction Treatment & Management
Article by Michael R. Shohet, MD and Maurice M. Khosh, MD
The Abbe Flap in Cleft Lip and Palate Repair
Article by Larsson J., Becker M., and Svensson H.
Plastic Surgery Secrets
A host of contributors, serach "Abbe Flap" in this PDF document

Ankyloglossia (Tongue-Tie)

Tongue-Tie.net
From confusion to clarity
Ankyloglossia - To Clip or Not to Clip?
From the American Speech-Language-Hearing Association
Pictures and Surgical Repair of Ankyloglossia
From the website of Bechara Y. Ghorayeb, MD

Audiology  (Also see Otolaryngology/ENT)

Help With Hearing
Booklet in PDF form from the Cleft Palate Foundation (also available in hard copy)
American Academy of Audiology
Find an audiologist
A Guide to Tympanometry for Hearing Screening
Includes explanation and samples of tympanograms
Newborn Infant Hearing Screening
American Speech-Language-Hearing Association (Be sure to click blue bar links)
Hearing Tests In Young Children
From The Medical Consumer's Advocate
BAHA - Bone-Anchored Hearing Aids
International Journal of Health Sciences

Birth Anomalies/Genetics   National Birth Defects Prevention Network

Recurrence Risk for Cleft Lip (with or without Cleft Palate)
Risks in siblings and children of persons with the anomaly
Recurrence Risk for Cleft Palate Only
Risks in siblings and children of persons with the anomaly
Frequency and Presentation
Statistics on number of cleft lip/palate births, unilateral, bilateral, cleft palate only, etc.
Mother-to-Baby - A service of OTIS (Organization of Teratology Information Services)
Access fact sheets on prenatal drug and other exposures
Birth Defect Research for Children
Participate in the National Birth Defect Registry
SafeFetus.com
Database of medications (generic & trade) providing information on fetal risk
Men Have Babies, Too
Discusses the effects of drugs and alcohol on a man's reprodcutive system
Researchers identify gene causing rare form of cleft palate
Imperial College of Science, Technology and Medicine
March of Dimes
Information and research
Genetic "Short Circuit" Leads to Cleft Palate
NIDCR Research
Genetic Professional Societies
Find a genetic counselor
Cleft Lip and Palate and Mouth and Pharynx Deformities
Authored by Ted L Tewfik, MD, FRCSC
Reproductive Development, Congenital Anomalies & Endocrine Effects
From The Children's Environmental Health Project
Smoking in Pregnancy Confirmed As a Cause of Oral Cleft Birth Defects
From the March of Dimes

Bone Distraction

Growing Bones: Bone Expansion Treats Facial Deformities
U.S. Food and Drug Administration
Alveolar Distraction Osteogenesis
Extensive explanations and photographs by Dr. Martin Chin, D.D.S.
Craniofacial Distraction Osteogenesis
From Children's Healthcare of Atlanta
Craniofacial Distraction Osteogenesis
Authored by Mario J Imola, MD, DDS, FRCSC, FACS
Jaw Distraction/Craniofacial Surgery
On-line discussion group offers support and insight
The Rigid External Distraction (RED II) System
Includes photos of the device, patient photos & answers to common questions
The Zürich Maxillary Distractor
Shows the hardware and a case study, manufacturer's website
The Zürich Mandibular Distractor
Shows the hardware and clinical examples, manufacturer's website
The Complete RED Survival Guide
A patient website includes tips on getting through the RED process

Bone Grafts

Bone Grafting the Cleft Maxilla
From The Cleft Palate Foundation
Final Operations For The Older Child Born With Cleft Lip/Palate
Written for Prescription Parents
Cleft Alveolus (scroll to section)
David S. Precious, DDS, MSc, FRCD, et. al.
Alveolar Bone Grafting - Why and When
From CLAPA
Minimization of morbidity in cranio-maxillofacial osseous reconstruction
Bone graft harvesting and coral-derived granules as a bone graft substitute
Use of Marrow-Cancellous Bone Grafts in Maxillary Alveolar and Palatal Clefts
Includes photos of bone grafting process
Reconstruction of the Frontal Sinus and Frontofacial Skeleton With Hydroxyapatite Cement
Report evaluates the use of hydroxyapatite cement, a bone substitute
Berkeley Advanced Biomaterials
Learn more about synthetic bone graft substitutes

Cleft Lip/Cheiloplasty

Cleft Lip
Article by Jagajan Karmacharya, MBBS, FRCS
Cleft Lip and Palate
Pediatric Plastic Surgery & Craniofacial Associates
Cleft Lip Nasal Deformity
Article by Samuel M Lam, MD and Maurice M Khosh, MD
Three Surgical Methods
SBCP
Unilateral Cleft Lip Repair
Article by Hongshik Han, MD, Nak-Heon Kang, MD and Pravin K Patel, MD
Lip Reconstruction
Article by Michael R Shohet, MD and Maurice M Khosh, MD
Some Before and After Pictures
From Childrens Hospital Los Angeles
Facts About Cleft Lip Repair - Preparing For Hospitalization
An generic overview from University of Texas Medical Branch
Cleft Lip Repair - Home Care Instructions
An generic overview from University of Texas Medical Branch
Preparing for Cleft Lip and/or Palate Surgery
From UC Davis
Secondary Surgery in Children with Cleft Lip and Palate
From Prescription Parents

Cleft Palate/Palatoplasty

Cleft Palate
Article by Michael J Biavati, MD and Benjamin Bassichis, MD
(Includes a brief history of the palate repair procedure)
Overview of Cleft Palate
Article by Peter Witt, MD and Jay Rapley, BS
Cleft Lip and Palate Deformities
Graphics and terminology
Craniofacial, Cleft Palate
Authored by Peter Witt, MD and Jay Rapley, BS
Caring For Your Child After Cleft Palate Surgery
From UC Davis
Facts About Cleft Palate Repair - Preparing For Hospitalization
An generic overview from University of Texas Medical Branch
Cleft Palate Repair - Home Care Instructions
An generic overview from University of Texas Medical Branch
Secondary Surgery in Children with Cleft Lip and Palate
From Prescription Parents
Alloderm
Donor tissue for palate repair
Decellularized Dermal Grafting in Cleft Palate Repair
The use of Alloderm for cleft palate repair

Feeding IssuesVisit our Feeders and Sippy Cups pages!

Tube Feeding Resources
See category below
Mom's Milk Matters - Breastfeeding a Baby With Cleft Lip or Cleft Palate
Article quotes the Cleft Palate Foundation and cleftAdvocate members
Lactation Information from cleftAdvocate!
Can you breastfeed?  Will you pump breastmilk?  Get answers here!
The Controversial Issue of Breast-feeding Cleft-affected Infants
By Jacalyn Hudson Miller (Contact j.h.m@telus.net for information)
Breatsfeeding A Baby With Cleft Lip and Palate
From La Leche League International
Immediate Concerns for Parents
Feeding and nutrition information from UC Davis Children's Hospital
The Non-Chew Cookbook
After-surgery recipes for liquid and pureed diets
Lact-Aid®
For babies capable of breastfeeding, but need supplementation
Haberman Feeder  (Ordering information on our Resources page)
By Medela
Mead-Johnson Feeder  (Ordering information on our Resources page)
Pigeon Feeder  (Ordering information on our Resources page)
Zip-N-Squeeze  (Ordering information on our Resources page)
Product promotes hydration and nutrition for children and adults after surgery
SoftSipp  (Ordering information on our Resources page)
A Zip-n-Squeeze product for post-operative feeding of infants and young children

Latham Device/Latham Appliance

Dr. Ralph Latham
The Canadian doctor who designed a device to help align the segments of the upper jaw prior to lip closure.

Latham Presurgical Maxillary Orthopedic Appliance
Long term effects, including effects on tooth growth
The Transformation Of A Child Born With A Cleft Lip
One family's documentation of the journey
A Custom-fitted Latham Appliance
Includes photo of the appliance and patient example (see page 4)
Latham Device
A brief description from the University of Michigan Health System (see page 5)

Median Facial (Midline) Clefts

Median Facial Plane Defects
Article describes anomalies associated with median facial cleft syndrome

Myringotomy/Myringotomy Tubes

Your Guide to Pressure Equalization Tube Surgery
An excellent animated explanation of ear anatomy  and the PE tube procedure
Tympanostomy Tubes
Excellent explanations and pictures from Texas Pediatric Surgical Associates
Serous Otitis Media
By David L. Steward, MD
Ear Tubes
Explanation and diagrams

Nasoalveolar Molding (NAM) Device

Nasoalveolar Molding
From Mount Sinai-NYU Medical Center, desribes the procedure and the device
Cleft Lip, Alveolus and Palate
From UTMB Otolaryngology Grand Rounds Presentation
Nasoalveolar Molding and Gingivoperiosteoplasty
A 12-year experience
Parade Magazine Article, Dec. 2002
NAM device reference  - Meet Tani, a member of the cleftAdvocate family!
Nasoalveolar Molding
From Seattle Children's Hospital

Nasoendoscopy

Sinus Endoscopy
An explanation of the procedure

Newborns
Congratulations and welcome!  See our Layette page!

Obturators

Soft Palate Tumor (Pleomorphic Adenoma)
From The Medical Consumer's Advocate
(NOTE:  While this is *a little* off topic, the final paragraphs offer a good explanation of the use of an obturator.)
Obturators For Hard and Soft Palate Defects
Great photographs, including patient examples
Obturator with Speech Bulb Extension
See page 128 for photo

Oral Health Basics

About Smiles
Good oral health begins at birth!  Special Needs section.
Dental and Orthodontic Terms
General dental terms, orthodontic terms and labeled dental diagram
Oral Health Tips
From the American Dental Hygienists’ Association (ADHA)
The American Dental Association
Oral health news and information

Orthodontics

Orthodontic Treatment
From the Cleft Lip and Palate Assocation of Ireland
Palate Expansion
Orthodontic palatal expansion for skeletal crossbite; photo of a palate expander

Orthognathic Surgery

The History Of Craniofacial Surgery
By Larry A. Sargent, M.D.
Orthognathic Surgery - Article by Pravin K Patel, MD Hongshik Han, MD and Nak-Heon Kang, MD.
A Glossary Of Terms
Learn more about jaw surgery
Consideration For Orthognatic Surgery During Growth.
From The Virtual Journal Of Orthodontics
Orthognathic Surgery Support
An on-line group featuring personal accounts of preparation and recovery
Orthognathic Surgery Info & Support
This informative site was designed by a jaw surgery patient, (not cleft-affected)
Orthognathic Surgery
Post-operative instructions
Orthodontic and Orthognathic Surgery Page
A patient shares her experience (not clet-affected)

Otolaryngology/ENT  (Also see Audiology)

American Academy of Otolaryngology−Head and Neck Surgery
Links directly to the Patient Health Information Index
Ear Tube Placement
Describes types of tubes and placement procedure
Your Guide to Pressure Equalization Tube Surgery
An excellent animated explanation of ear anatomy  and the PE tube procedure
Fluid in the Middle Ear (Serous Otitis Media)
An overview by Mark J. Levenson, MD, FACS
Acute Otitis Media
Symptoms and treatment
What Is Otitis Media?
This fact sheet includes a diagram
Otitis Media and Otitis Externa
Explanations and graphics of the outer, inner and middle ear.
Tympanometer/Tympanograms
Measuring movement of the ear drum, detecting fluid in the ear

Pain Management

Pain, Pain, Go Away: Helping Children With Pain
A booklet to teach parents about pain in children and to help them to ask for better care
How to take the sting out of a kid's owie
Tips from Leora Kuttner, a pediatric pain specialist
"No Fears, No Tears" - Children Coping With Pain
Pain management video
Top 10 Things You Need to Know about Pediatric Pain Management
From the University of Michigan
Pain Research Highlights and Insights
Includes The Faces Pain Scale

Palate Expansion

Palate Expanders
Examples of retainers and palate expander devices

Pharyngeal Flap/Sphincter Palatoplasty (Also see VPI)

How Speech Instrumentation, Surgery and Prosthetics Can Help Patients
By John E. Riski, Ph.D.
Cleft Palate and/or Velopharyngeal Dysfunction: Assessment and Treatment
Sponsored by the ASHA Special Interest Division 5: Speech Science and
Orofacial Anomalies-Education Committee
Pharyngoplasty and Pharyngeal Flaps
Authored by Pravin K Patel, MD
Palatopharyngeal Incompetence
Authored by Michael J Biavati, MD and Gina Rocha-Worley, MS, CCC/SLP

Prosthetics

Cleft palate prostheses
Great photographs, including patient examples

Reflux

Gastroesophageal Reflux in Infants
Information on symptoms, diagnosis and treatment from the National Institutes of Health

Research and Access to Information

National Institutes of Health
Health and research information
National Institute of Dental and Craniofacial Research
Extensive information on conditions and diseases, research and statistics
Clinical Trials
Search by disease, location, treatment, etc.
MedLine Plus
Includes a medical encyclopedia and dictionary

Rhinoplasty

Structural Support in Correction of Cleft Nasal Deformity
Article by Mark Gorney, MD
Rhinoplasty
Post-operative instructions

Scars

Understanding Facial Scar Treatment
American Academy of Facial Plastic and Reconstructive Surgery
Scar Revision
Timing and treatment options
Palmer's Lotion (Reader Recommendation)
Cocoa Butter Formula Moisture-Enriched Lotion with Vitamin E
Available in drug stores and supermarkets in bottle, jar and stick
Creme de la Mer  (Reader Recommendation)
Available at upscale depatment stores or on-line
Curad Scar Therapy
An over-the-counter product  to reduce the appearance of scars
Mederma
Skin care for scars
Dermablend
Excellent scar coverage, available at upscale department stores or on-line

Speech/Language Pathology

cleftAdvocate Speech Teleconference
Download a recording of the June 2002 session, and find additional speech links
Managing Speech Disorders - Speech Instrumentation, Surgery and Prosthetics
From Children's Healthcare of Atlanta
Speech Strategies and Facilitating Techniques
From Children's Healthcare of Atlanta
Speech-Language Eligibility Criteria/Matrix for Schools
Guideline for speech/language eligibility criteria/matrix for schools
Treatment Options for Better Speech
From The Cleft Palate Foundation
Speech Samples for Normal and Hypernasal Speech
Speech samples or men, women, and children
Speech Concerns
A chapter from The Cleft Palate Story by Samuel Berkowitz, DDS, MS, FICD
Phonetics Flash Animation Project
Animated library of sounds...SEE and HEAR how sounds are made!
Velopharyngeal Insufficiency
Authored by Michael J. Biavati, MD and Kathleen Sie, MD
Speech and Language Therapy
When is therapy needed?
SpeechDelay.com
Speech and language milestones by age and more
Complete Speech - Palatometry(Contact a family using this device)
Computerized speech aid; learn how and where sounds are formed in the mouth
American Speech/Language-Hearing Association
Resources and information
Child Speech and Language
From the American Speech-Language-Hearing Association
Speech Conditions and Diagnoses
Cincinnati Children's Hospital Medical Center
Welcome to Our Clinic Activity and Coloring Book
Children's Voice Clinic Cincinnati Children's Hospital Medical Center
Speechville
Information and resources on various speech/language disorders
Sign With Me
Teach your child infant sign language before they can speak
Speech Development Related to Cleft Palate
Children’s Hospitals and Clinics of Minnesota
Signing Time
VHS/DVD selections to teach young children in a very entertaining way!
Start American Sign Language (ASL)
Fun, free on-line ASL courses!

Stress and Family Issues

Dealing With Emotional and Social Issues
Coping With Facial Differences
When Your Baby Has A Birth Defect
Acknowledging Your Emotions
Cleft Lip and Palate:  Family Reactions and Emotions
From Children's Healthcare of Atlanta
Tips That Bullies Don't Want Your Kids To Know
Get the free report
Robby the Bear Goes to the Hospital
Animated feature helps your child undersand his/her trip to the hospital
Going To School (A Film Directed and Edited by Richard Cohen)
Available for personal & educational use
The Fathers Network
Information and resources for fathers, family members, and care providers
Don't Laugh At Me  Read the Cleft Advocate Reader Review
Founded by Peter Yarrow of the folk group Peter, Paul & Mary
Dr. Peter Alsop
An educational psychologist, Dr. Alsop is also a song-writer/motivational speaker
Bullyettes
A booklet about relational aggression by Girl Scout Troop 614 of Bloomington, IN
Starbright
Resources for children and teens dealing with hospitalization and school re-entry
The Sibling Support Project
Dedicated to the interests of siblings of people with special health care needs
Meld
On- and off-line parenting resources
A Little Inspiration
A Cleft Advocate page

Submucous Cleft

Submucous Cleft Palate
Photo shows bifid uvula and a submucous cleft (triangle area)
Submucous Cleft Palate
From Cleft Palate Foundation Publications
Submucous Cleft Palate Explained
And velopharyngeal insufficiency
Submucous Cleft
Sample magnetic resonance images from child with a submucous cleft
Velopharyngeal Insufficiency
Authored by Michael J Biavati, MD and M Tarek Orfaly, MD

Surgical Splint

What's A Splint For?
From Orthognathic Surgery Info & Support
Challenges Presented By The Splint
From Orthognathic Surgery Info & Support

Syndromes (Related to Cleft Lip/Palate)

See our new Syndromes page!

Teeth

Pediatric Dental Chart
Includes an approximate guideline for eruption
Natal Teeth
From Medline
The Oral Health of Children With Clefts of the Lip, Palate, or Both
From the National Library of Medicine
Tooth Decay Is A Contagious Disease
From UCSF

Tonsils/Adenoids

Your Tonsil and Adenoid Surgery
From the Center of Excellence for Medical Multimedia

Tessier Clefts

Peach's Story on Tessier Clefts
From the Cleft Palate Foundation, includes diagrams and explanations
Ryan's Website
Excellent personal website includes both craniofacial and ophthalmology info
Craniofacial Clefts
A brief explanation, including photos

Tube Feeding

Gastrostomy Tube
FAQ from Carolina Pediatric Dysphagia
Gastrostomy Tube (G-Tube) Home Care
From Cincinnati Children's Hospital Medical Center
Meal Time Notions
Support for those who feed infants and young children with special feeding challenges
On-line Feeding Support Network
Yahoo group dedicated to support of families dealing with feeding disorders
Feeding - G-Tubes
Yahoo group dedicated to feeding issues and g-tubes
Gastroparesis Patient Association for Cures and Treatments
J-tube information and peer support

Uvula

The Case of the Missing Uvula
From The Medical Consumer's Advocate
Bifid Uvula
A photograph

Velopharyngeal Insufficiency (VPI)
(See Pharyngeal Flap/Sphincter Palatoplasty)

Velopharyngeal Insufficiency
Authored by Michael J Biavati, MD and M Tarek Orfaly, MD
Speech Problems - Cleft Lip and Palate Guide
Articulation Disorders Related to Cleft Lip/Palate and Craniofacial Disorders
Palatopharyngeal Incompetence
Authored by Michael J Biavati, MD and Gina Rocha-Worley, MS, CCC/SLP
Palatal Rehabilitation After Cleft Palate Surgery
From the Grand Rounds at Baylor College of Medicine

Videofluoroscopy

Videofluoroscopy/Swallow Study
A brief explanation from the University of Michigan

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This cleftAdvocate page was last updated April 12, 2014
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