Distraction process
Patient story

Distraction for craniofacial syndromes

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Distraction osteogenesis, or mandibular bone lengthening, is a relatively new process to treat underdeveloped jaws in children. Distraction - when done properly - offers greater safety and more effective correction than other options, such as a tracheostomy (trach) or tongue-lip adhesion, without the long-term complications.

In 1994, Children's Hospital of Wisconsin surgeons in the Center for Craniofacial Disorders were the first in North America and Europe to perform distraction on a series of neonates born with underdeveloped lower jaws. Our large experience with this technique has shown it to be very effective. Since then, we have used distraction to treat more than 150 children with varying diagnoses with consistent success.

Some syndromes that might qualify for distraction include:

• Pierre Robin sequence.
• Stickler's syndrome.
• Hemifacial microsomia.
• Crouzon syndrome.
• Apert syndrome.
• Velocardiofacial syndrome or Shprintzen syndrome.
• Freeman-Sheldon syndrome.
• Pfeiffer syndrome.
• Nager syndrome.
• Saether-Chotzen syndrome.
• Carpenters syndrome.
• Oculo-auriculo-vertebral (OAV) defect spectrum.
• Treacher Collins syndrome (TCS).
• Opitz syndrome.
• Atypical facial clefts.

As one of the few pediatric centers performing distraction, our research, clinical experience, refined techniques and dedicated group of pediatric specialists have been critical to our good results.

We have used distraction to treat newborns as well as older children. Many times, infants are referred for distraction when other efforts to manage their airway have not worked. Some of these include having them lie only on their stomach (prone positioning) or placing a breathing tube (intubation). Older children often are referred for distraction if treatments, such as a tongue-lip adhesion or tracheostomy (trach), have not helped. We consistently perform this surgery on both groups successfully.

The immediate concern for a child born with one of these syndromes is a blocked airway. Many times, the jaw is too small to allow space for the tongue, which slides back into the throat, blocking the child's breathing and preventing or complicating eating.

In a recent study of 11 newborn babies who received distraction at Children's Hospital, all had their breathing tubes removed within three to six days after the surgery. More than half were eating by mouth at 1 month of age and all were eating by mouth at 1 year of age.