New advances and procedures concerning Pierre Robin Sequence are constantly being developed. Be an advocate for your child!

PIERRE ROBIN SEQUENCE

Click here to read about the new non-surgical treatment called "SOAP" for Pierre Robin Sequence

What is Pierre Robin?

Pierre Robin Sequence (often called Pierre Robin or PRS) is a pattern of differences that may occur at birth. It isn’t one disease, but a sequence of features that can include:

A smaller lower jaw (micrognathia)
A tongue that tends to fall toward the back of the throat (glossoptosis)
Breathing and feeding challenges
Cleft palate (often U-shaped or “horseshoe-shaped”) may also be present.

Why did this happen?

Doctors don’t know all the reasons Pierre Robin Sequence occurs, and it’s rarely caused by anything parents did during pregnancy. In cases where it happens on its own, many experts believe early jaw position and growth play a role.

Recent research is helping us understand genetic factors too. Scientists have discovered new genes linked to intellectual disability in children with Pierre Robin Sequence and other challenges — discoveries that can help speed diagnosis and guide future targeted therapies. This gives hope for more precise care in the years ahead.

Can Pierre Robin Sequence Be Identified Before Birth?

Advances in imaging are making it possible to see signs of Pierre Robin Sequence during routine prenatal ultrasounds (especially around 20 weeks), such as a smaller jaw or certain facial measurements. While confirmation still happens after birth, this earlier recognition gives families and care teams more time to prepare for specialized support.

Emerging tools using artificial intelligence may soon help extract even more useful information from routine scans, without extra cost or extra appointments.

Is Pierre Robin Sequence Genetic?

While Pierre Robin Sequence doesn’t usually run in families, it can sometimes be part of a broader syndrome. For example:

Because these conditions can have important medical implications, FACES recommends genetic testing to check for associated syndromes.

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.

Every child's experience is unique.

Will My Child Need Surgery?

Surgery depends on severity and individual needs. It may include:

Cleft palate repair
Airway or feeding support procedures
Jaw surgery, when necessary

However, exciting research shows that non-surgical treatments can be effective in some cases. For example, devices such as the Stanford Orthodontic Airway Plate (SOAP) can help improve breathing without surgery in babies with severe airway obstruction. All patients in one study avoided major surgical procedures after using SOAP, and their breathing improvements were sustained.

This approach is especially valuable because it may reduce risk and stress for families by offering a less invasive first step when appropriate.

Early Care and Specialist Support

At birth, infants with Pierre Robin Sequence benefit from evaluation by a craniofacial care team looking at both feeding and breathing needs. Early involvement of specialists helps ensure appropriate support and smoother transitions through infancy and beyond. (craniofacialresearch.ucsf.edu)

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?

You are not alone.

There are many families, groups, and organizations ready to share support, understanding, and information. In addition to FACES, a wide range of resources can help you connect, learn, and advocate for your child.

Additional Resources

Syndrome Organization Websites

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.

National Organization for Rare Disorders (NORD)

rarediseases.org/rare-diseases/pierre-robin-sequence/

American Cleft Palate Craniofacial Association

acpacares.org/

Cleft Lip & Palate Association

clapa.com/what-is-cleft-lip-palate/related-conditions-and-syndromes/pierre-robin-sequence/

Pierre Robin Europe

pierrerobineurope.com

Pierre Robin Australia

pierrerobin.org.au/join-us

Office of Rare Diseases

rarediseases.info.nih.gov/diseases/4347/pierre-robin-sequence