New advances and procedures concerning Pierre Robin Sequence are constantly being developed. Be an advocate for your child!
PIERRE ROBIN SEQUENCE
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)
Horsehoe-shaped cleft palate may or may not be present
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
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.
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
US National Library of Medicine
Your guide to understanding genetic conditions
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.
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
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
Keep Your Chin Up
Everything You Never Knew You'd Need To Know About Pierre-Robin Sequence
Written by Jessica Carey
So you've been told that your new baby has a medical condition called Pierre-Robin Sequence. OK. I know you’re scared right now, because I’ve been there. Finding helpful information online was almost impossible, which only made it scarier. That’s I why I wrote this book.
Available here: Keep Your Chin Up
The Cleft Palate Story
Written by Samuel Berkowitz, DDS, MS, FICD.
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.
Children with Facial Difference:
A Parent's Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.