PIERRE ROBIN SEQUENCE

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What is Pierre Robin?

Pierre Robin is not a syndrome or a disease. It is usually referred to as Pierre Robin Sequence, although it is also know as "Pierre Robin Malformation Sequence", "Robin Anomalad", and "Cleft Palate, Micrognathia and Glossoptosis." It is the name given to the following birth defects if they appear together:

small lower jaw (micrognathia)
a tongue which tens to ball up at the back of the mouth and fall back towards the throat (glossoptosis)
breathing problems
horsehoe-shaped cleft palate may or may not be present

Why did this happen?

Doctors do no know exactly why Pierre Robin occurs. They do not believe it is the result of anything the mother did or did not do during pregnancy. If the child only has Pierre Robin, many experts believe that it is the result of the positioning of the foetus in the early weeks of pregnancy.

Will this happen to children I have in the future?

Pierre Robin does not tend to run in families. The chances of you having another child with Pierre Robin are very small, unless the Pierre Robin Sequence is a part of a syndrome.

What kinds of problems could my child have?

In addition to the physical characteristics common to Pierre Robin, your child may have the following problems:

feeding problems in infancy
ear infections
reduced hearing
about 40% of infants with Pierre Robin have Stickler Syndrome and about 15% have Velocardiofacial Syndrome. FACES recommends genetic testing be done to determine if your infant has either of these associated syndromes. The Pierre Robin Network has excellent information concerning genetic testing for babies born with Pierre Robin Sequence.

Will my child need surgery?

Depending on the severity of Pierre Robin, your child may have some or all of the following surgeries:

surgery to repair the cleft palate
special devices to protect the airway and aid in feeding
surgery to improve breathing
the small jaw associated with Pierre Robin usually grows out on its own during the first two years, and usually no surgery is necessary on the jaw.

New advances in procedures to correct the problems associated with Pierre Robin are constantly being made. Be an advocate for your child!

How do I get help for my child?
Your child should be treated by a qualified craniofacial medical team at a craniofacial center. Currently, FACES has information on thirty-two craniofacial teams located in 20 states, the District of Columbia, and Canada. This is by no means a comprehensive list of all the craniofacial teams. Please contact FACES for details.

Am I alone?
No! There are many families and organizations who will be glad to talk with you and help you with information and support. Don't forget books, videos, and websites. The listing below will get you started.

FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
email: faces@faces-cranio.org
We provide financial support for non-medical expenses to patients traveling to a craniofacial center for treatment. Eligibility is based on financial and medical need. Resources include newsletters, information about craniofacial conditions, and networking opportunities.

Pierre Robin Network
P. O. Box 3274
Quincy, IL 62305
Email: info@pierrerobin.org
Website: http://www.pierrerobin.org
This is an internet support group composed of parents who are networking together to offer support to each other. There is also an outreach committee available to talk to those without internet access.

Wide Smiles, inc.
P.O. Box 5153
Stockton, CA 95205-0153
(209) 942-2812
E-mail: widesmiles@aol.com
Website: http://www.widesmiles.org
Excellent resource! Wide Smiles is a cornucopia of information including cleft-related documents, stories, photos, and networking for parents, professionals, children, and teens. Very good Pierre Robin information.

The Cleft Palate Foundation (CPF)
104 South Estes Drive, Suite 204
Chapel Hill, NC 27514
(800) 24-CLEFT
Email: cleftline@aol.com
Website: http://www.cleftline.org
Resources include 24-hour information phone, fact sheets on cleft lip and palate and Pierre Robin, brochures, and medical referrals.

The Cleft Palate Story. Written by Samuel Berkowitz, DDS, MS, FICD. Published by Quintessence Publishing Co., 1-800-621-0387.
Surgical procedures performed from birth to adolescence are treated in depth; helps parents to understand options and what to expect; appendices on financial assistance, agencies, support groups, and a glossary of terms.

National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org
Provides extensive information on health care law affecting families with children who have special health care needs.

Children with Facial Difference: A Parent's Guide.
Written by Hope Charkins, MSW. Published by Woodbine House, 1996. 1-800-843-7323.
Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children.

MUMS
National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877) 336-5333
http://www.netnet.net/mums/
This organization helps you get in touch with parents
in your area whose children also have Pierre Robin.