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 known 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 tends 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

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Why did this happen?
Doctors do not 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 fetus 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.

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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.

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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 many of these teams. This is by no means a comprehensive list of all the craniofacial teams.
Please Contact Us 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 information below will help you get started. (Facebook has dozens of private groups specific to conditions. Try searching Facebook with a few different key words such as "craniofacial" or "burn" and find groups of parents and others with similar differences.)

FACES: The National Craniofacial Association

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 (Apply Here). Resources include newsletters, information about craniofacial conditions, and networking opportunities. Contact Us for more information.

 

Office of Rare Diseases

The Genetic and Rare Diseases Information Center

Excellent web site for finding information on a variety of craniofacial disorders, particularly very rare ones. Information specialists are available to answer your questions. Telephone operation is Monday - Friday, 12 pm to 6 pm Eastern Time. Email or fax requests for information will be answered within 5-10 working days. U.S. Mail requests will be answered within 5-10 working days. NOTE: The center does not give medical advice, provide treatment, or diagnose illness.
Phone: (888) 205-2311
Website: rarediseases.info.nih.gov/diseases/4347/pierre-robin-sequence

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US National Library of Medicine

Your guide to understanding genetic conditions

Website: ghr.nlm.nih.gov/condition/isolated-pierre-robin-sequence

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Pierre Robin Sequence Support, Awareness & Research

This is a platform where everyone that is effected with/by PRS can come together and share their stories and journey. This group was created so that we can all stand together in creating awareness for PRS WORLDWIDE.

www.facebook.com/groups/prsawareness

The Cleft Palate Foundation (CPF)

Resources include 24-hour information phone, fact sheets on cleft lip and palate and Pierre Robin, brochures, and medical referrals.
Phone: (800) 24-CLEFT or (800) 242-5338
Website: cleftline.org

 

National Health Law Program

Provides extensive information on health care law affecting families with children who have special health care needs.
Phone: (202) 289-7661

Website: healthlaw.org

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Additional Resources

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