Chromosomal and Genetic Conditions

Robin Sequence

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    • If you are a provider, fax a New Appointment Request Form (NARF) (PDF) (DOC) to 206-985-3121 or 866-985-3121 (toll-free).
    • Instead of fax, you can use eReferral, an online method for submitting referrals and tracking referral status. If you don’t have an eReferral login, learn more.
    • No pre-referral work-up is required, but it is helpful to receive clinical information (such as head circumference and a description of head shape). Fax any clinic notes along with the NARF.
    • If imaging studies (CT, MRI, X-rays) have been done, please upload to eMix or mail a disc to:
      Seattle Children’s Craniofacial Center
      P.O. Box 5371/OB.9.520
      Seattle, WA 98145-5005
    • View our complete Craniofacial Center Referral Information (PDF).

What is Robin sequence?

Babies born with Robin sequence have a small lower jaw and a tongue placed further back than normal. These features tend to block the baby’s airway. This can lead to problems with breathing and feeding. Some children have breathing problems in their first months of life and others develop problems later. Many children with Robin sequence also have a gap in the roof of their mouth (cleft palate).

Robin is pronounced ro-BAHN. The condition is also known as Pierre Robin sequence. It is named for the French doctor who linked the symptoms to breathing problems. In a sequence, one feature sets off a series of events in early pregnancy that cause the other problems.

Robin sequence affects 1 in 8,500 to 1 in 20,000 newborns worldwide.

Children with Robin sequence need coordinated care from providers in many areas of healthcare. At Seattle Children’s Craniofacial Center, our multidisciplinary team of experts covers 19 different specialties.

What causes Robin sequence?

For many children, the cause of Robin sequence is not known. Doctors and researchers suspect it is caused by changes in genes or chromosomes. So far, they have not been able to pinpoint the exact changes that cause Robin sequence.

Robin Sequence at Seattle Children’s

Many families have never heard of this condition before their child is born with it. Our craniofacial team is experienced in treating children with complex conditions that involve jaw problems or cleft palate— including Robin sequence. Every year we care for more than 300 children with cleft-related conditions.

Many of our patients are newly diagnosed babies. We also work with children who received their initial care at another hospital.

Please call the Craniofacial Center at 206-987-2208 for more information, a second opinion or to make an appointment.

  • Over the past 5 years, we have cared for 88 children with Robin sequence. Our experience with craniofacial conditions helps us find problems early and take steps to prevent or treat them.

    We have more surgeons specializing in cleft repair than any other center in the country. Read about Seattle Children’s expertise in craniofacial surgery.

    See Statistics and Outcomes for details on the children we care for and procedures we perform.

  • Our center has experts in every field your child might need. These 50 specialists work together to diagnose and care for our patients.

    Our team meets weekly to discuss children with complex needs and determine the best care plan for each child. We work together, and with you and your family’s doctor, to manage your child’s personalized care.

    A craniofacial pediatrician, nurse, family service coordinator and social worker will work closely with your family. They coordinate your child’s care and make sure all your questions are answered.

    Your pediatrician guides your child’s treatment and decides if other specialists are needed. These may include an ear, nose and throat doctor (otolaryngologist), craniofacial plastic surgeon, oral-maxillofacial surgeon, orthodontist, feeding therapist, dietitian, audiologist and speech and language pathologist (SLP).

  • We provide the treatment that is right for your child at the right time.

    After your baby is born, we deal with any breathing problems right from the start. We measure your baby’s growth, teach you feeding techniques and take any needed steps to help your baby thrive. We regularly check your child’s vision and hearing and their speech and language development.

    As your child grows, we do surgeries and provide other treatments to fix problems that affect their breathing, feeding, hearing, speech development and bite (occlusion).

  • A diagnosis of Robin sequence can be scary. We take time to explain your child’s condition. We help you understand your treatment options and make the choices that are right for your family.

    As your child gets older, we make sure they are involved in decisions about their medical care.

    Our child life specialists and social workers help your child and your family through the challenges of this condition. We connect you to community resources and support groups.

    Seattle Children’s provides craniofacial care for children in an area one-fourth the size of the continental United States. We also care for children from across the globe. This experience has helped us develop systems to provide outstanding, personalized care close to home and at a great distance.

  • Seattle Children’s receives more research funding from the National Institutes of Health (NIH) than any other craniofacial center in the United States.

    Our researchers are working to:

    • Help children breathe and sleep better if they have airway problems caused by Robin sequence
    • Ensure the best outcomes for children born with conditions related to clefts
    • Understand more about what causes clefting and find ways to prevent it

    Learn about Robin sequence research and cleft-related studies at Seattle Children’s.

Symptoms of Robin Sequence

Babies born with Robin sequence may have:

  • A much smaller jaw than normal (micrognathia) and a receding chin
  • A tongue that is placed further back than normal and blocks the airway (glossoptosis)
  • A gap in the roof of the mouth (cleft palate)
  • Breathing problems and noisy breathing or snoring
  • Feeding problems and slow weight gain

Diagnosing Robin Sequence

There is no test to diagnose Robin sequence. Your doctor will examine your child carefully. An exam may be all that’s needed to make the diagnosis.

In half of children with features that indicate Robin sequence, one of these happens:

  • A gene change that is suspected of causing Robin sequence is found.
  • A child has Robin sequence plus other differences (for example, a heart condition, bone differences or low muscle tone).
  • A child has features that indicate Robin sequence caused by a genetic condition such as Stickler syndrome, Treacher Collins syndrome or auriculocondylar syndrome.

In the other half of children with features of Robin sequence, no genetic changes are found and the child has no other physical differences (like a heart condition). This is called isolated Robin sequence.

Your doctor will check for other differences to tell if your child has Robin sequence as part of a geneticsyndrome. About 20% to 30% of babies with Robin sequence have Stickler syndrome, a condition that can affect the eyes, hearing and joints.

Your doctor may do an eye exam to look for signs of Stickler syndrome or a blood test to look for an abnormal gene that causes another condition.

  • Our Craniofacial Genetics Clinic helps identify conditions caused by changes in genes. Our geneticists and genetic counselors help you understand the pros and cons of genetic testing. They explain test results.

    A genetic counselor also will give you information about your child’s condition. Counseling can help you make informed decisions about family planning and your child’s treatment.

  • Robin sequence also has been called:

    • Pierre Robin syndrome
    • Pierre Robin sequence
    • Pierre Robin malformation sequence
    • Robin anomalad
    • Pierre Robin complex

Treatment of Robin Sequence

There is no single treatment plan for Robin sequence. The treatments and timing we recommend depend on your child.

  • The first priority is keeping your baby’s upper airway open so they can breathe easily.

    We will watch your child’s breathing and growth throughout childhood. Some children have breathing problems in their first months of life and others develop problems later.

    Your child may have these tests to help their care team understand the cause of breathing problems and decide on the best treatment:

    • Blood tests to check for the right balance between oxygen and carbon dioxide (CO2).
    • Looking inside your child’s windpipe using a flexible tube with a light and camera (endoscope). The doctor inserts the tube through your baby’s nose.
    • Monitoring your child’s breathing while they sleep to learn if they have obstructive sleep apnea. Learn about overnight sleep studies (PDF).
    • CT (computed tomography) scan of the facial bones. This helps doctors decide if your child will be helped by jaw surgery.

    Options to help your child breathe

    The best treatment depends on your child’s age and whether they have breathing problems during sleep, during feeding or most of the time.

    The options include:

    • Keeping your baby on their stomach when they sleep to prevent their tongue from falling back and blocking their upper airway.
    • Placing a small tube through your baby’s nose into the upper airway. This is called a nasopharyngeal airway.
    • Surgery to make your child’s lower jaw (mandible) larger. This involves using a small metal device (distractor) to lengthen the jawbone over 2 weeks. As the lower jaw moves forward, the tongue moves forward, and the airway at the back of the throat opens up. The distractor is left in place for 2 more months while the bones heal in their new position. Read more about mandible distraction.
    • Placing a breathing tube in the windpipe (tracheostomy) if breathing problems are severe.
    • Giving medicine to prevent backup (reflux) of stomach acid into the throat if gastroesophageal reflux is a problem for your baby.
    • Using feeding tubes to avoid the stress of eating if breathing problems happen while your child eats.

    As your baby grows, their breathing may improve because their tongue and jaw position change.

    Children with obstructive sleep apnea who are 4 years or older may benefit from wearing a mask while they sleep that keeps air flowing into their airway. The mask is connected to a CPAP (continuous positive airway pressure) device. Children younger than 4 usually are too small or unwilling to use the mask while sleeping.

  • Once your baby is breathing comfortably, feeding is usually much easier.

    Starting soon after birth, we regularly check your child’s weight and growth.

    The tongue position and breathing problems caused by Robin sequence can make it hard for your child to suck, swallow and breathe. Your baby may need to be held in a certain way while feeding. We can show you helpful feeding techniques.

    If your baby has a cleft palate, they will not get enough suction to suck milk out of the breast or regular bottle. When they suck, the roof of their mouth will not close off the mouth from the nose. Babies with cleft palate usually need special bottles and nipples. We can help you understand the different types of bottles.

    Options for babies who need more than special bottles

    If your baby is not able to get enough nutrition by mouth, they may need a tube through their nose to their stomach for the first few months of life. This is called a nasogastric feeding tube or NG tube.

    If the feeding tube is needed for many months, your doctor may recommend using a tube through their abdominal wall into their stomach. This is called a gastrostomy tube.

    Many babies with Robin sequence also have problems with:

    • Backup of stomach acid into the throat. Medicine and changes to your child’s diet can help.
    • Sucking liquid into the windpipe. We treat this with special feeding techniques, thickening milk and using a feeding tube. The feeding tube might go from the nose to the stomach (NG tube) or to the beginning of the small intestine (nasoduodenal or ND tube).

    In children with Robin sequence that is not part of a syndrome (isolated), feeding is usually not a problem after your child is 1 year. As your child grows, they get stronger and their airway gets bigger. If Robin sequence is related to a syndrome, feeding may continue to be a challenge because of other problems.

  • If your child has a gap in the roof of their mouth (cleft palate), they will need surgery to repair it. Usually this happens between 12 and 18 months.

    During cleft palate surgery, the cleft is closed. Muscles at the back of the roof of the mouth are put in their proper place across the cleft.

    Most often, surgery takes 3 hours. Your child usually will stay in the hospital 1 to 2 nights. Read more about treatments for cleft palate.

    Because cleft palate repair may affect your child’s airway, your team will check your child carefully after surgery for any sign of breathing problems.

  • We check your baby’s hearing throughout their childhood. Most children with cleft palate have fluid buildup behind their eardrum. This can make it harder to hear.

    • Every 6 to 12 months, a specialist trained to test hearing in babies and children (audiologist) will check your child’s hearing.
    • If there are problems, an ear, nose and throat doctor (otolaryngologist) will see your child.
    • If fluid buildup is a problem for your child, we recommend putting small plastic tubes into their eardrums. These tympanostomy tubes keep the middle ear clear of fluid. It is often done at the same time as surgery to fix cleft palate.
  • Cleft palate can affect your child’s ability to talk. A speech and language pathologist (SLP) will regularly check your child’s ability to talk and how their language is developing. We start even before your child’s cleft palate is repaired, as early as 9 months.

    Some children with cleft palate have a condition called velopharyngeal dysfunction (VPD). They may have trouble making correct speech sounds, even after the cleft is repaired.

    Depending on your child’s needs, we may recommend:

    • Speech therapy to develop more normal speech patterns.
    • A custom-made speech appliance called an obturator.
    • Surgery on the roof of the mouth or throat. Your surgeon and speech pathologist will work together to recommend what is best for your child.
  • Teeth problems are more likely in children with Robin sequence than in other children. An orthodontist and dentist experienced in caring for children with craniofacial conditions are able to give your child the treatment they need.

    • Children with clefts are at higher risk for cavities. The hard coating (enamel) on their teeth may have weak areas that decay easily. Regular dental visits and careful tooth care are important, starting with baby teeth.
    • Teeth crowding may be a problem as your child’s permanent teeth come in. Some children need to have teeth pulled because there isn’t enough room for all of the adult teeth.
    • Your child will likely need orthodontic treatment to align their teeth during the teen years.
    • As your child grows, the position of their upper and lower teeth gets better. This is partly because of growth of the lower jaw. It is also because the upper jaw grows less than normal in children with clefts.
    • Sometimes when a child’s jaws are finished growing, their lower jaw is still too small in relation to the upper jaw. Orthodontic treatment alone may not be enough to fix the problem.
    • Your child may need surgery to make their lower jaw larger. Learn more about mandibular advancement.
    • If your child also has a condition like Stickler syndrome, they may need surgery on their upper jaw.

Contact Us

Contact the Craniofacial Center at 206-987-2208 for an appointment, a second opinion or more information.