Distraction osteogenesis for craniofacial syndromes

A team of experts from many specialties at Children’s Hospital of Wisconsin use a comprehensive approach to treat craniofacial syndromes, including underdeveloped jaws.

Distraction osteogenesis, or mandibular bone lengthening, is a process to treat underdeveloped bones. It is especially useful in the treatment of small jaws in infants and children. When successful, it may avoid the need for tracheostomy in children born with small jaws who have difficulty breathing. It is perhaps the most important advance in craniofacial surgery in the last 20 years, enabling treatment of conditions that in the past could not be addressed so effectively.

Our expertise and experience

In 1994, Children's Hospital of Wisconsin surgeons in the Craniofacial Disorders Program were the first in North America and Europe to perform distraction on a series of neonates born with underdeveloped lower jaws. Our extensive experience with this technique has shown it to be very effective. Since we first performed distraction almost 20 years ago, we have successfully treated more than 150 children with varying diagnoses. Our research, clinical experience, refined techniques and dedicated group of pediatric specialists have been critical to our good results.

The distraction process

The distraction process is not limited to one condition. Some syndromes that might qualify for distraction include:

  • Pierre Robin sequence
  • Stickler syndrome
  • Hemifacial microsomia 
  • Crouzon syndrome
  • Apert syndrome
  • Velocardiofacial syndrome / DiGeorge syndrome
  • Freeman-Sheldon syndrome
  • Pfeiffer syndrome
  • Nager syndrome
  • Saether-Chotzen syndrome
  • Carpenter syndrome
  • Oculo-auriculo-vertebral (OAV) defect spectrum
  • Treacher Collins syndrome (TCS)
  • Opitz syndrome
  • Atypical facial clefts

Learn more about the distraction process.

Is distraction right for my child?

We have used distraction to treat newborns as well as older children. Our patients often are referred to us when previous treatments haven’t worked.

For example, infants are referred for distraction when other efforts to manage their airway, like intubation and prone positioning, have failed. Doctors sometimes refer older children for distraction for reasons other than airway problems. These problems may include mismatch of the jaws, making chewing difficult, for example. Another reason may be that the child had a tracheostomy in early infancy because a small jaw made breathing difficult, but the child did not grow normally and now needs his or her jaw lengthened so that the tracheostomy can be removed.

How can distraction help?

The immediate concern for a child born with certain craniofacial syndromes is a blocked airway. Many times, the jaw is too small to allow space for the tongue, so the tongue slides back into the throat. This can block the airway and make breathing difficult, and it also can prevent or complicate normal eating.

In a recent study of 11 newborn babies who received distraction at Children's Hospital, all had their breathing tubes removed within 3 to 6 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.

If you have questions, call our craniofacial / plastic surgery nurse clinician at (414) 266-2825.