Surgery and Treatment Information

Cleft Q&A
A page designed for new parents.

Cleft Teams
Learn about the team concept and find a team and other resources in your area.

Lactation
Will you be able to breastfeed your baby with cleft lip and/or palate?

Learn More
Audiology, ENT, speech/language, genetics, secondary surgery and more.  Access documents written by medical professionals.
Support, Referral and Education     (International)

AmeriFace  (cleftAdvocate is a program of AmeriFace)
PO Box 751112
Las Vegas, NV 89136-1112
Phone:  (888) 486-1209 (toll-free), Fax:  (702) 341-5351
info@ameriface.org

Our Pathfinder Partner Organizations include:

American Cleft Palate-Craniofacial Association (ACPA)
1504 East Franklin St., Suite 102
Chapel Hill, NC 27514-2820
Phone:  (919) 933-9044
Fax:  (919) 933-9604

Children's Craniofacial Association
13140 Coit Road, Suite 517
Dallas, TX 75240
Phone:  (800) 535-3643 or (214) 570-9099
contactCCA@ccakids.com

Cleft Palate Foundation (CPF)
Stacy Keach, Honorary Chairman
CLEFTLINE: 1-800-24-CLEFT (24 hours, toll free)

Cleftopedia
Parent/patient feedback on various teams/physicians

FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
Phone:  (800) 332-2373
faces@mindspring.com

Foundation for Faces of Children
258 Harvard St., # 367
Brookline, MA 02446
Phone:  (617) 355-8299
info@facesofchildren.org

Jorge Posada Foundation for Craniosynostosis
P.O. Box 2038
New York, NY 10159-2038
Phone:  (866) 823-8005
foundation@jorgeposada.com

Let's Face It
University of Michigan
School of Dentistry / Dentistry Library
1011 N. University
Ann Arbor, MI 48109-1078
faceit@umich.edu

Moebius Syndrome Foundation
PO Box 147
Pilot Grove, MO 65276
Phone:  (660) 834-3406
Vicki McCarrell

National Foundation for Ectodermal Dysplasias
410 E. Main Street
P.O. Box 114
Mascoutah, IL 62258–0114
Phone:  (618) 566-2020
Fax:  (618) 566-4718
info@nfed.org
Arm Immobilizers

MEDI-KID
P.O. Box 5398
Hemet, CA 92544
Phone:  (951) 925-8800 or (888) 463-3543
Fax:  (951) 925-0686
melinda@medi-kid.com

Pediatric Medical Solutions
Snugglewraps and other cleft-related items
974 Harbortowne Road
James Island,  SC 29412
Phone:  (843) 762-6769
Fax:  (866) 332-0628
able@pediatricmedicalsolutions.com

Posey Company
5635 Peck Rd.
Arcadia, CA 91006-0020
Phone:  1-800-44-POSEY (447-6739)
Fax:  1-800-767-3933
See Freedom Splints and Elbow Splints

Ear Plugs/Water Protection/Misc.

Canica Design - DynaCleft
Tapes for pre- and post-surgical taping and NAM use
36 Mill Street
Almonte, Ontario
K0A 1A0, Canada
Phone:  (613) 256-0350 or (800) 705-8312
sales@canica.com

The Original Earband-It
JACo Enterprises
PO Box 22084
Phoenix AZ 85028
Phone:  (602)  942-1191 or (800) 678-0078
Fax:  (602) 482-2216
info@earband-it.com

Aqua-Earbands
13297 Temple Blvd Bldg B
West Palm Beach, FL 33412
Phone:  (888) 426-4327

Danny Ties™
New Danny Ties™ tracheostomy holder minimizes skin irritation, securely holds artificial airway for infant, pediatric and adult patients.

Croakies® Adult Eyewear Retainers
Also see Kids Retainers
88 Life Link Way
Bozeman, MT 59718
Phone:  (800) 443-8620
Fax: (406) 587-4303

Bermuda Babies Drool Bandanas
5431 Dellview Street
Chilliwack, BC, Canada V2R 3Y9
Phone:  (604) 657-2951
orders@bermudababies.com

The WubbaNub™ Infant Pacifier
Children's Medical Ventures (Dog and Duck)

The WubbaNub™ Infant Pacifier
Baby Planet Boutique (Horse, Duck, Frog)

The Tucker Sling®
Infant-positioning system for babies with reflux
or requiring post-op elevation.
P. O. Box 641117
Kenner, LA 70064
Phone:  (800) 780-7479 or (504) 464-7479
Fax: (504) 464-7480
info@tuckerdesigns.com

Beyond Play
Facial and oral massager for children with oral defensiveness
1442A Walnut Street, #52
Berkeley, CA 94709
Phone:  1-877-428-1244 (toll free)
custserv@beyondplay.com

Dry Pro
Cast, prosthesis, PICC line water protection
349 Military Cutoff Road
Wilmington, NC 28405
Phone: (910) 791-0009
Fax: (910) 791-4479
Toll Free: (888) 337-9776

Toothette Disposable Swabs
Beyond Play
1442A Walnut Street #52
Berkeley, CA 94709
Phone:  1-877-428-1244 (8am-4pm, Pacific Time, M-F)
Fax:  1-877-218-8441 (toll free)
custserv@beyondplay.com
Financial/Surgical Resources

Shriner's Hospitals For Children
International Shrine Headquarters
2900 Rocky Point Dr.
Tampa, FL 33607-1460
Phone:  (813) 281-0300

Fresh Start Surgical Gifts
2011 Palomar Airport Rd, Suite 206
Carlsbad, CA 92011
Phone:  (760) 944-7774
Toll-Free: (888) 551-1003
Fax:  (760) 944-1729

Thousand Smiles Foundation
P.O. Box 606
Bonita, CA 91908-0606
Phone:  (619) 470-2885
Fax:  (619) 267-4553
information@thousandsmiles.org

Healing the Children
National Office
P.O.Box 9065
Spokane,WA 99209-9065
Phone:  (509) 327-4281
Fax:  (509) 327-4284
respond@healingthechildren.org
Click here for regional United States chapters

Share A Smile Foundation
4572 Turnberry Ct.
Plano, TX 75024
Phone:  (972) 208-8813 or (972) 567-8191
Holly Stock
Founder & Managing Director
Funding for treatment of children with vascular malformations

Children's Corrective Surgery Society
338 West 3rd Ave.
Escondido, CA 92025
Phone:  (760) 735-9065
Fax:  (760) 735-2977

World Craniofacial Foundation
7777 Forest Lane, Suite C-621
P.O. Box 515838
Dallas, TX 75251-5838
Phone:  (972) 566-6669
or (800) 533-3315
Fax:   (972) 566-3850
worldcf@worldnet.att.net

The NewFace Foundation, Inc.
Brookwood Medical Plaza, Suite 372
513 Brookwood Boulevard
Birmingham, AL 35209
Phone:  (205) 879-6665
Fax:  (205) 879-3873
phpp@aol.com

Operation Rainbow
4200 Park Blvd PMB 157
Oakland, CA 94602
Phone: (510) 273 2485
info@operationrainbow.org

Operation Restore Hope
PO Box 1185
Double Bay, NSW 1360
Sydney, Australia
Phone:  +61 (2) 9362 7480
Fax:  +61 (2) 9328 6036
info@operationrestorehope.org

Smile Train
41 Madison Ave., 28th floor
New York, NY 10010
Phone:  (800) 932-9541
or (212) 689-9199
Fax:  (212) 689-9299
info@smiletrain.org

Operation Smile
6435 Tidewater Drive
Norfolk, VA 23509
Phone:  (757) 321-7645
Fax:  (757) 321-7660

Interplast
300-B Pioneer Way
Mountain View, CA 94041-1506
Phone:  (650) 962-0123 or
1-888-INPLAST (1-888-467-5278)
Fax:  (650) 962-1619
IPNews@interplast.org
Travel Resources

Air Charity Network™ (ACN)
National charitable aviation network includes Angel Flight regions as well as Mercy Medical Airlift
410 1st Ave. NW
Rochester, MN 55901
To request assistance:  (877) 621-7177 or e-mail

Miracle Flights for Kids®
2756 N. Green Valley Parkway #115
Green Valley, NV 89014-2120
Phone:  (800) FLY-1711
Phone:  (702) 261-0494
Fax:  (702) 261-0497

PatientTravel.org
(Formerly the National Patient Air Transport HELPLINE)

Lodging/Accommodation Resources

The National Association of Hospital Hospitality Houses
Lodging and support services
Hospitality Hotline  (800) 542-9730
Daily 9 a.m. to 5 p.m. EST

Ronald McDonald House Charities
Find a house using this on-line tool

Fisher House
Military Resource includes lodging and support services
(888) 294-8560
FisherHouse@aol.com
Insurance Resources

State Insurance Commissions
Check our state pages

COBRA Tips
From insure.com

Insure Kids Now!
For children with no health insurance who don't qualify for Medicaid.  Some states also insure families.  Links to programs also available on our state pages.

State Medicaid Programs
Check our state pages
QuickLinks
Feeding and Nutrition

Cleft Palate Nursers/Feeding Alternatives

Sippy Cups

The Controversial Issue of Breastfeeding
Cleft-affected Infants by Jacalyn Hudson Miller
Downloadable Soon!  A cleftAdvocate on-line exclusive!

Mead Johnson Cleft Palate Nurser
Order on-line or call (800) 222-9123
Pricing as of December 2006 - $19.00/6 bottles, includes shipping; Case of 72 nursers - $148.00, includes shipping

SpecialNeeds™ and Mini-SpecialNeeds™
Formerly known as the Haberman Feeder
Instructions
ONLY replacement parts are available directly from Medela
Phone:  (800) 435-8316
Oder Spare Parts Here
(See retail distributors below)

Find a Local Medela Dealer
SpecialNeeds™ and Mini-SpecialNeeds™ Feeders
and Breast Pumps)

Medela International Distributors (Outside USA)

Philips Children's Medical Ventures
Specialty feeding supplies, including Pigeon feeders
191 Wyngate Drive
Monroeville, PA  15146
To place an order:  (888) 766-8443
Phone: (800) 345-6443
Outside the USA: (724) 387-4000

MedEx Supply
Pigeon Bottles and Nipples >>>
Medela SpecialNeeds™ Feeders >>>

Playtex® VentAire Bottle
Available at your local store.  Parents report using this bottle with the Pigeon nipple.
Ask a parent at  the FTFC!

Dr. Brown's Bottles
Parents report using this bottle with the Pigeon nipple
(Dr. Brown's Bottles are also now available at Walmart)
Handi-Craft Company
4433 Fyler Avenue
St. Louis, Missouri 63116
Phone:  1-800-778-9001
info@handi-craft.com

Pigeon Cleft Palate Nurser
Pigeon w/Long Nipple
4350 Steeles Avenue East, Unit A13
Box 98 Markham, Ontario Canada L3R 9V4
To order, call (866) 886-3811 or (fax) 1-866-886-3812
Local : (905)-513-7265, Fax: (905)-513-7268
daniel@galtak.com

Ross Educational Services Department
Cleft palate nurser, Item #00875x
Parents report using this bottle with Ross Preemie Nipple
Order direct from Ross, as this item is noted on their website.  Call toll-free (800) 986-8503 Monday-Friday, 8:30 AM - 5:00 PM, EST.  Price as of September 2005 is $1.75 per bottle, a minimum order of 3 bottles required.

Similac® Premature Nipple & Ring (formerly Ross)
Order at www.rosstore.com or call (800) 258-7677 to place an order.  Pricing as of April 2014 - $48.99/case of 48

Similac® Orthodontic Nipple and Ring (formerly Ross)
Order at www.rosstore.com or call
Ross at 1-800- FORMULA (1-800-367-6852)
Pricing as of April 2014 - $54.25/case of 50
Includes shipping

Zip-n-Squeeze
For post-operative feeding, no sucking required
Com-Pac International
800 West Industrial Park Road
Carbondale, Illinois 62901
Phone:  (800) 824-0817

Pediatric Medical Solutions
TenderCare™ post-op feeder
974 Harbortowne Road
James Island,  SC 29412
Phone:  (843) 762-6769
Fax:  (866) 332-0628
able@pediatricmedicalsolutions.com

Maternal Concepts
130 N. Public Street
Elmwood, Wisconsin 54740
United States
Phone:  (800) 310-5817
Fax:  (715) 639-2739
sales@maternalconcepts.com
SuckleCup and SuppleMate offer post-op feeding options

Self Expressions
SpecialNeeds™ and Mini-SpecialNeeds™ Feeders/Parts
1 Sherwood Dr
Shalimar, FL, 32579
Phone:  Toll Free (877) 463-3352
From Northwest Florida, call (850) 651-4500
sales@selfexpressions.com

Mothering From The Heart
Stocks SpecialNeeds™ and Mini-SpecialNeeds™ Feeders
Phone:  (256) 528-7953
Marsha@MotheringfromtheHeart.com

Enfamil Human Milk FortifierRead our disclaimer
Order on-line or call 1-800-BABY123, Mon. - Fri. 7 AM to
7 PM Central Time or  Sat. 8 AM to 4:30 PM Central Time

Similac Human Milk FortifierRead our disclaimer
Order on-line or call (800) 551-5838, Monday through Friday, 8:30 AM to 6:00 PM Eastern Time

ScandicalRead our disclaimer
Taste-free calorie booster; consult your physician.
Axcan Pharma Inc. - United States
22 Inverness Center Parkway
Birmingham, AL 35242 USA
Phone: (205) 991-8085
Fax: (205) 991-8176

DuocalRead our disclaimer
Neutral flavor calorie booster; consult your physician.
Nutricia North America
P.O. Box 117
Gaithersburg, MD 20884
Phone:  (800) 365-7354
NutritionServices@shsna.com

Thick-It®Read our disclaimer
Instant food thickener; consult your physician.
Phone: (800) 333-0003
Also available at Walgreens and CVS Pharmacies

State WIC Programs
Check our state pages for links to your county office.  WIC provides supplemental foods (including formula)
and nutrition education.

La Leche League
Information on breastfeeding infants with clefts

Submit a Link

This website is driven by the needs of our readers.  If you know of of product or service our visitors should know about, please contact us.



Readers' Choice!
Readers' Choice!
NEW PARENTS!
Visit the
Layette page!
Resources
We subscribe to the HONcode principles of The Health On Net Foundation
© cleftAdvocate
All Rights Reserved
Disclaimer
This cleftAdvocate page was last updated May 10, 2014
cleftAdvocate
a program of ameriface