A tongue-based obstruction (TBO) is a developmental defect that causes the tongue to fully or partly block a child’s airway. This defect can accompany a number of different congenital or hereditary conditions that include an abnormally large tongue or abnormally small lower jaw. Though there are varying degrees of tongue-based obstructions, all can cause significant breathing and feeding issues.
Tongue based obstructions generally occur as a result of a discrepancy between the size of the tongue (abnormally large) and the size of the lower jaw (abnormally small). Other causes of airway obstruction are central neurological developmental problems and low muscle tone.
In its most severe form, TBO can cause a child to stop breathing and turn purple. This is uncommon, but can be very frightening for families. More commonly, TBO presents as a progressive series of signs and symptoms that may include poor weight gain, poor feeding, prolonged feeding, inattention, poor sleep habits, bed wetting or a decline in school performance.
Evaluation of TBO includes a thorough history and physical examination. Your doctor may use a validated screening tool to assess the likelihood of TBO causing obstructive sleep apnea (OSA). Additional diagnostic tools include X-rays, a 16-lead polysomnogram or “sleep study,” or a sleep MRI. Your child’s assessment may include other specialists such as pulmonologists, otolaryngologists (ear, nose and throat or ENT experts), geneticists and feeding specialists.
In more mild cases of tongue-based obstructions, management may consist of positioning your child conservatively in a cranial side position or the addition of a nasopharyngeal airway until your child matures neurologically and has grown enough to bring the tongue into a more favorable position. In patients who are more severely affected or have abnormal sleep study results, surgical alternatives can be considered.
Surgical intervention includes tongue-lip adhesion, mandibular distraction or tracheostomy. Tongue-lip adhesion and mandibular distraction osteogenesis have both been performed with good outcomes.
In tongue-lip adhesion, the undersurface of the tip of the tongue is sutured to the inside of the lower lip to hold it in a more forward position. If successful, this is released in three to six months.
In distraction osteogenesis, an internal or external device is applied to the mandible and a cut is made posteriorly. By activating the device, the jaw is gradually brought forward carrying the tongue with it. This procedure improves the airway as new bone forms in the gap.
If neither of these procedures is successful or your child has disease below the base of the tongue, she may need a tracheostomy.
The long-term outlook for TBO is generally positive, as long as it is recognized early and effectively treated. Our multidisciplinary team has an excellent track record of success in treating children with tongue-based obstructions to ensure good long-term outcomes.
The multidisciplinary team at CHOP is world renowned for advancing the understanding and management of TBO. Our dedicated team of experts has access to the most up-to-date diagnostic and treatment modalities and is committed to delivering family-centered care to ensure the best experience for your child and the rest of the family.
Reviewed by: Jesse Taylor, MD