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American Cleft Palate-Craniofacial Association (ACPA)
St. John's Health Center Cleft/Craniofacial Team
Produced by The Center for Children with Special Health Needs
Children’s Hospital and Regional Medical Center, Seattle, WA
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.
Article by Michael R. Shohet, MD and Maurice M. Khosh, MD
Article by Larsson J., Becker M., and Svensson H.
A host of contributors, serach "Abbe Flap" in this PDF document
Ankyloglossia (Tongue-Tie)
From confusion to clarity
From the American Speech-Language-Hearing Association
From the website of Bechara Y. Ghorayeb, MD
Audiology (Also see Otolaryngology/ENT)
Booklet in PDF form from the Cleft Palate Foundation (also available in hard copy)
Find an audiologist
Includes explanation and samples of tympanograms
American Speech-Language-Hearing Association (Be sure to click blue bar links)
From The Medical Consumer's Advocate
International Journal of Health Sciences
Birth Anomalies/Genetics National Birth Defects Prevention Network
Risks in siblings and children of persons with the anomaly
Risks in siblings and children of persons with the anomaly
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
Participate in the National Birth Defect Registry
Database of medications (generic & trade) providing information on fetal risk
Discusses the effects of drugs and alcohol on a man's reprodcutive system
Imperial College of Science, Technology and Medicine
Information and research
NIDCR Research
Find a genetic counselor
Authored by Ted L Tewfik, MD, FRCSC
From The Children's Environmental Health Project
From the March of Dimes
Bone Distraction
U.S. Food and Drug Administration
Extensive explanations and photographs by Dr. Martin Chin, D.D.S.
From Children's Healthcare of Atlanta
Authored by Mario J Imola, MD, DDS, FRCSC, FACS
On-line discussion group offers support and insight
Includes photos of the device, patient photos & answers to common questions
Shows the hardware and a case study, manufacturer's website
Shows the hardware and clinical examples, manufacturer's website
A patient website includes tips on getting through the RED process
Bone Grafts
From The Cleft Palate Foundation
Written for Prescription Parents
David S. Precious, DDS, MSc, FRCD, et. al.
From CLAPA
Bone graft harvesting and coral-derived granules as a bone graft substitute
Includes photos of bone grafting process
Report evaluates the use of hydroxyapatite cement, a bone substitute
Learn more about synthetic bone graft substitutes
Cleft Lip/Cheiloplasty
Article by Jagajan Karmacharya, MBBS, FRCS
Pediatric Plastic Surgery & Craniofacial Associates
Article by Samuel M Lam, MD and Maurice M Khosh, MD
SBCP
Article by Hongshik Han, MD, Nak-Heon Kang, MD and Pravin K Patel, MD
Article by Michael R Shohet, MD and Maurice M Khosh, MD
From Childrens Hospital Los Angeles
An generic overview from University of Texas Medical Branch
An generic overview from University of Texas Medical Branch
From UC Davis
From Prescription Parents
Cleft Palate/Palatoplasty
Article by Michael J Biavati, MD and Benjamin Bassichis, MD
(Includes a brief history of the palate repair procedure)
Article by Peter Witt, MD and Jay Rapley, BS
Graphics and terminology
Authored by Peter Witt, MD and Jay Rapley, BS
From UC Davis
An generic overview from University of Texas Medical Branch
An generic overview from University of Texas Medical Branch
From Prescription Parents
Donor tissue for palate repair
The use of Alloderm for cleft palate repair
See category below
Article quotes the Cleft Palate Foundation and cleftAdvocate members
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)
From La Leche League International
Feeding and nutrition information from UC Davis Children's Hospital
After-surgery recipes for liquid and pureed diets
For babies capable of breastfeeding, but need supplementation
By Medela
Pigeon Feeder (Ordering information on our Resources page)
Product promotes hydration and nutrition for children and adults after surgery
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.
Long term effects, including effects on tooth growth
One family's documentation of the journey
Includes photo of the appliance and patient example (see page 4)
A brief description from the University of Michigan Health System (see page 5)
Median Facial (Midline) Clefts
Article describes anomalies associated with median facial cleft syndrome
Myringotomy/Myringotomy Tubes
An excellent animated explanation of ear anatomy and the PE tube procedure
Excellent explanations and pictures from Texas Pediatric Surgical Associates
By David L. Steward, MD
Explanation and diagrams
Nasoalveolar Molding (NAM) Device
From Mount Sinai-NYU Medical Center, desribes the procedure and the device
From UTMB Otolaryngology Grand Rounds Presentation
A 12-year experience
NAM device reference - Meet Tani, a member of the cleftAdvocate family!
From Seattle Children's Hospital
Nasoendoscopy
An explanation of the procedure
Newborns
Congratulations and welcome! See our Layette page!
Obturators
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.)
Great photographs, including patient examples
See page 128 for photo
Oral Health Basics
Good oral health begins at birth! Special Needs section.
General dental terms, orthodontic terms and labeled dental diagram
From the American Dental Hygienists’ Association (ADHA)
Oral health news and information
Orthodontics
From the Cleft Lip and Palate Assocation of Ireland
Orthodontic palatal expansion for skeletal crossbite; photo of a palate expander
Orthognathic Surgery
By Larry A. Sargent, M.D.
Orthognathic Surgery - Article by Pravin K Patel, MD Hongshik Han, MD and Nak-Heon Kang, MD.
Learn more about jaw surgery
From The Virtual Journal Of Orthodontics
An on-line group featuring personal accounts of preparation and recovery
This informative site was designed by a jaw surgery patient, (not cleft-affected)
Post-operative instructions
A patient shares her experience (not clet-affected)
Otolaryngology/ENT (Also see Audiology)
Links directly to the Patient Health Information Index
Describes types of tubes and placement procedure
An excellent animated explanation of ear anatomy and the PE tube procedure
An overview by Mark J. Levenson, MD, FACS
Symptoms and treatment
This fact sheet includes a diagram
Explanations and graphics of the outer, inner and middle ear.
Measuring movement of the ear drum, detecting fluid in the ear
Pain Management
A booklet to teach parents about pain in children and to help them to ask for better care
Tips from Leora Kuttner, a pediatric pain specialist
Pain management video
From the University of Michigan
Includes The Faces Pain Scale
Palate Expansion
Examples of retainers and palate expander devices
Pharyngeal Flap/Sphincter Palatoplasty (Also see VPI)
By John E. Riski, Ph.D.
Sponsored by the ASHA Special Interest Division 5: Speech Science and
Orofacial Anomalies-Education Committee
Authored by Pravin K Patel, MD
Authored by Michael J Biavati, MD and Gina Rocha-Worley, MS, CCC/SLP
Prosthetics
Great photographs, including patient examples
Reflux
Information on symptoms, diagnosis and treatment from the National Institutes of Health
Research and Access to Information
Health and research information
Extensive information on conditions and diseases, research and statistics
Search by disease, location, treatment, etc.
Includes a medical encyclopedia and dictionary
Rhinoplasty
Article by Mark Gorney, MD
Post-operative instructions
Scars
American Academy of Facial Plastic and Reconstructive Surgery
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
An over-the-counter product to reduce the appearance of scars
Skin care for scars
Excellent scar coverage, available at upscale department stores or on-line
Speech/Language Pathology
Download a recording of the June 2002 session, and find additional speech links
From Children's Healthcare of Atlanta
From Children's Healthcare of Atlanta
Guideline for speech/language eligibility criteria/matrix for schools
From The Cleft Palate Foundation
Speech samples or men, women, and children
A chapter from The Cleft Palate Story by Samuel Berkowitz, DDS, MS, FICD
Animated library of sounds...SEE and HEAR how sounds are made!
Authored by Michael J. Biavati, MD and Kathleen Sie, MD
When is therapy needed?
Speech and language milestones by age and more
Computerized speech aid; learn how and where sounds are formed in the mouth
Resources and information
From the American Speech-Language-Hearing Association
Cincinnati Children's Hospital Medical Center
Children's Voice Clinic Cincinnati Children's Hospital Medical Center
Information and resources on various speech/language disorders
Teach your child infant sign language before they can speak
Children’s Hospitals and Clinics of Minnesota
VHS/DVD selections to teach young children in a very entertaining way!
Fun, free on-line ASL courses!
Stress and Family Issues
Coping With Facial Differences
Acknowledging Your Emotions
From Children's Healthcare of Atlanta
Get the free report
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
Information and resources for fathers, family members, and care providers
Founded by Peter Yarrow of the folk group Peter, Paul & Mary
An educational psychologist, Dr. Alsop is also a song-writer/motivational speaker
A booklet about relational aggression by Girl Scout Troop 614 of Bloomington, IN
Resources for children and teens dealing with hospitalization and school re-entry
Dedicated to the interests of siblings of people with special health care needs
On- and off-line parenting resources
A Cleft Advocate page
Submucous Cleft
Photo shows bifid uvula and a submucous cleft (triangle area)
From Cleft Palate Foundation Publications
And velopharyngeal insufficiency
Sample magnetic resonance images from child with a submucous cleft
Authored by Michael J Biavati, MD and M Tarek Orfaly, MD
Surgical Splint
From Orthognathic Surgery Info & Support
From Orthognathic Surgery Info & Support
Syndromes (Related to Cleft Lip/Palate)
Teeth
Includes an approximate guideline for eruption
From Medline
From the National Library of Medicine
From UCSF
Tonsils/Adenoids
From the Center of Excellence for Medical Multimedia
Tessier Clefts
From the Cleft Palate Foundation, includes diagrams and explanations
Excellent personal website includes both craniofacial and ophthalmology info
A brief explanation, including photos
Tube Feeding
FAQ from Carolina Pediatric Dysphagia
From Cincinnati Children's Hospital Medical Center
Support for those who feed infants and young children with special feeding challenges
Yahoo group dedicated to support of families dealing with feeding disorders
Yahoo group dedicated to feeding issues and g-tubes
J-tube information and peer support
Uvula
From The Medical Consumer's Advocate
A photograph
Velopharyngeal Insufficiency (VPI)
Authored by Michael J Biavati, MD and M Tarek Orfaly, MD
Articulation Disorders Related to Cleft Lip/Palate and Craniofacial Disorders
Authored by Michael J Biavati, MD and Gina Rocha-Worley, MS, CCC/SLP
From the Grand Rounds at Baylor College of Medicine
Videofluoroscopy
A brief explanation from the University of Michigan
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This cleftAdvocate page was last updated May 2, 2014
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