Robin Sequence | Diagnosis & Treatments

How is Robin sequence diagnosed?

A doctor can diagnose Robin sequence during an exam immediately after your baby is born. The visible symptoms of this sequence are:

  • a small lower jaw (mandible)
  • an opening in the roof of the mouth (cleft palate)
  • a tongue that is positioned further back in the mouth than normal (glossoptosis)

Infants with these facial differences are commonly taken to the neonatal intensive care unit (NICU) in the first day of life to be monitored for breathing problems (oxygen desaturations) and to provide assistance with feeding.

If your child has been diagnosed with Robin sequence, a geneticist can provide a full genetic evaluation to determine if the sequence is part of a syndrome that affects other organs and tissues.

The expert team of doctors and specialists at Boston Children’s Hospital includes a geneticist who can provide a thorough evaluation using a simple blood test.

Meet our craniofacial team.

What are the treatment options for Robin Sequence?

Treatment for Robin sequence ensures your baby can eat and breathe safely and comfortably. At Boston Children’s Hospital, our dedicated and knowledgeable team of specialists from several disciplines provides you and your child with the care and expertise necessary to treat this combination of facial differences. We provide both surgical and nonsurgical treatments.

Airway and breathing treatments

Children with Robin sequence may have trouble getting enough oxygen. This is due to glossoptosis — a tongue that is positioned further back in the mouth than normal.

Nonsurgical treatments to assist with breathing include:

  • Positioning. Laying your baby on his or her side or belly will help to pull the tongue forward and unblock the airway. Your child will need to be continuously monitored with an oxygen saturation monitor.
  • Nasopharyngeal airway. At Boston Children’s, our craniofacial team can insert a small, flexible tube into your child’s nose and down the throat (ending just above the vocal cords). This tube keeps the airway open by preventing the tongue from falling back and blocking it. This tube will need to be changed every few days. If your baby needs to use this tube over the long term, the size and length may need adjusting to accommodate your baby’s growth. Learn about our Craniofacial Program.

Some children may also require surgery. At Boston Children’s, potential surgical interventions include:

  • Tongue-lip adhesion (TLA) — This procedure:
    • corrects the position of your baby’s tongue by pulling the base of the tongue forward and stitching it to the lower lip
    • holds the tongue forward until your child develops a more stable airway with growth
    • is reversed when your baby’s cleft palate is repaired, at approximately 9 to 11 months old
  • Mandibular distraction osteogenesis (MDO) — This process:
    • lengthens the jaw in a forward direction
    • pulls the tongue base forward
    • relieves the obstruction of the airway
    • involves generating new bone by progressively stretching divided segments of the jaw

Feeding treatments

At Boston Children’s, our dedicated craniofacial nurses will weigh your child and provide frequent follow-ups to make sure you have answers to all your questions. As we monitor your child’s growth and weight gain, our team of doctors and nurses may suggest the following:

  • Specialty feeders: The Haberman feeder is the most commonly used bottle for infants with Robin sequence, a cleft palate, or both. In this specially designed bottle, the nipple is separated from the bottle by a one-way valve. It helps your baby feed by rewarding even the weakest suck with formula or breast milk. It also:
    • never floods
    • reduces wind, vomiting, and colic
    • has variable flow settings
    • allows to you apply compression to help your baby receive milk
  • Nasogastric feeding tube (NG tube): This is a flexible tube made of rubber that is passed through your baby’s nose and into the stomach. NG tubes are utilized as a temporary solution (weeks to months) to ensure weight gain.
  • Gastrostomy feeding tube (G-tube): A feeding tube that is inserted directly into the stomach to provide nutrition. This tube is surgically placed and is used as a long-term solution (six months to years).

Cleft palate repair

Your child’s cleft palate will be treated when he or she is 9 to 11 months old. Boston Children’s provides one of the largest cleft lip and palate programs of its kind. Our combination of specialized training, innovative treatments, and compassionate, family centered care has made us a national leader in the field. This program can provide your child and family with:

  • highly advanced surgical cleft palate repair
  • dental and orthodontic treatment
  • feeding guidance and nutritional support
  • evaluation and management of hearing loss
  • speech therapy
  • psychosocial support and counseling

The type of treatment depends on the extent of the cleft and may include:

  • Dentofacial orthopedics: Repairs of the face and jaw that may require appliances in upper jaw to widen the palate or headgear to correct an underbite.
  • corrective surgery and follow-up surgery to make additional corrections.

Make an appointment

For an appointment with the Cleft and Craniofacial Center, more information, or to obtain a second opinion for your child, please call us at 617-355-6309 or email

International patients

For families residing outside of the United States, please call Boston Children's Global Services at +01-617-355-5209.