Distraction process
Patient story

The distraction process

A child's bones, especially facial and skull bones, are so active, there is great opportunity to help mold the way they form. Distraction takes advantage of a child's great ability to grow bone. When a child's bone is cut or broken, it rapidly heals by producing more bone. By making a small cut in a child's jaw and creating a space between the two ends, bone grows in between. By continuing to expand the space each day and allow bone to grow, a longer jaw is created. The jaw can be lengthened exactly the right distance for each child's need.

A series of pins is inserted into the jaw to control the segments.  Expansion can continue until the necessary size is reached, usually in 2-3 weeks. The expansion is then stopped and the bone becomes solid in 4-6 weeks.  The distraction process is far less painful than it might look and all measures are taken to make the child as comfortable as possible. Children recover from the initial placement quickly and return to most normal childhood activities. In addition, the children are able to eat softer foods normally while the pins are in place.  Most do not require additional airway or nutritional support. In 4-6 weeks, the bone becomes solid, the pins are removed and the jaw lengthening is complete. Scarring is minimal - far less noticeable than that of a trach - and fades over time. In our experience, this is the only procedure needed to correct the jaw and airway. Other operations may be needed to correct problems associated with the initial syndrome, such as cleft palate.

No surgery is without risks. However, with experience, we have been able to reduce possible complications to the point where this procedure has fewer complications than procedures performed at other centers, such as trach placement or tongue-lip adhesion. Correct placement of the pins is critical. This includes properly identifying the area that needs to be moved and the strongest area of bone that can withstand the process. The majority of distractions with poor outcomes at other centers have failed because of incorrect pin placement.

Why not a tracheostomoy or tongue-lip adhesion?
A tracheostomy is not a long-term treatment for craniofacial disorders, nor is it as temporary as one might hope. Most children who receive a trach are 3 years old before it is removed (decannulated) and not all children with Pierre Robin syndrome ever are decannulated. During this time, the tracheostomy may prevent the child from eating by mouth and speaking. A gastrostomy tube is placed, in many cases, to help provide nutrition, but this can lead to other problems. In addition, a toddler who never has eaten by mouth or spoken will have significant delays and require long-term speech, language, feeding and swallowing therapies once the trach is removed.

Another option is a tongue-lip adhesion, which is a surgery to open the airway by sewing the tongue to the bottom lip. Some children who receive this surgery may be able to learn how to eat, though most will not be able to speak well until surgical release of the tongue is performed. It will take time for their jaw to grow enough that the tongue can be released, during which time development is seriously delayed.

Neither a tracheostomy nor a tongue-lip adhesion treats the issue of the underdeveloped or disproportionate jaw. While mild cases may somewhat resolve themselves over many years, most will not. Distraction is the safest, quickest way to provide normal airway and feeding and resolve the "small jaw" look of many syndromes.