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Pierre Robin Sequence

  • Overview

    Pierre Robin sequence, also called Pierre Robin syndrome, is a congenital condition in which an infant has a smaller-than-normal lower jaw, a tongue that falls back in his throat and difficulty breathing.

    Craniofacial Anomalies Program

    The Craniofacial Anomalies Program at Boston Children's Hospital provides a team approach to the evaluation, diagnosis and treatment of children and adults with congenital facial deformities, such as Pierre Robin sequence. If your child has been suffering, our doctors can help.

    Expert team

    Our program is staffed by an experienced team of clinicians, all with specialized training in the care of children with craniofacial anomalies. Each year we treat more than 500 patients, 250 of them new patients, making our program one of the most experienced programs of its type in the country.

  • In-Depth

    What causes Pierre Robin sequence?

    No one knows, though it may be part of many genetic syndromes. No known food, medication, or activity during pregnancy can cause Pierre Robin sequence.

    How common is Pierre Robin sequence?

    It's very rare. Most cases of Pierre Robin sequence are sporadic, meaning they occur once in a family, with a low chance of it occurring in another pregnancy.

    What symptoms might my child have?

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

  • Tests

    How is Pierre Robin sequence diagnosed?

    Since a child is born with Pierre Robin sequence, it is usually diagnosed at birth by the physical signs.

    A consultation with a genetics specialist can help you rule out other problems linked to this syndrome.

  • How is Pierre Robin sequence treated?

    Depending on the severity of the disorder, your child may require some or all of the following surgeries:

    • surgery to repair a cleft palate
    • special devices to protect your child's airway and aid in feeding
    • surgery to improve breathing (tongue-lip adhesion)
    • surgery to improve feeding

    Caring for your child

    • Don't put your child on his back, because his tongue may fall back into the airway.
    • Feeding must be done very carefully to avoid choking and breathing liquids into the airways. Your child may need to be fed through a tube occasionally to prevent choking.

    What's my child's long-term outlook?

    Choking and feeding problems may go away on their own over the first few years as your child's lower jaw grows to a more normal size.

    There is a significant risk of problems if your child's airways are not protected against blockage.

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This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

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