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This page is intended to provide you with information for you to discuss with your doctor. Every Pierre Robin child is different and requires his/her own care plan. Only you and your doctors can make the best decisions for your child.
We have good things about this Yahoo group which is centered around jaw distraction procedures: http://health.groups.yahoo.com/group/jawdistraction
Due to the recessed chin, the tongue tends to fall back and restrict airflow in children with Pierre Robin. If this is severe, it may cause serious breathing problems making surgery necessary. The most common procedure for this is a trach. In some instances, that is still the best choice. However, in some cases craniofacial surgeons are offering an alternative: jaw distraction.
The surgery was originally used to lengthen limbs, like the leg. But in the 1990ís, smaller devices were developed to allow craniofacial surgeons to use a similar technique to lengthen the jawbone. Under anesthesia, the surgeon cuts the jawbone on both sides of the face. He then anchors the appliance to the bone and turning a screw on the distractor gradually increases the distance between them daily. New bone is formed in the gap as the gap widens. Once the desired length is achieved, the turning stops and the device is usually left in until the bone is stabilized. This is usually 6-8 weeks, but it varies depending on the surgeon and age of the child. The device is then removed.
External versus Internal Devices
Your surgeon will decide which device is best for your child, but here is some basic information:
Advantages of external distractors include ease of placement and removal. Some devices also allow multi-directional control allowing the jaw to be manipulated more. Typically, they also allow a greater length of distraction. However, they are more likely to cause significant scars. A good picture of external distractors can be found at http://www.ppsca.com/bone.htm.
Internal distractors are less visible, but are currently able to move the bone in only one direction, for a specific length (usually under 25 mms) and also require a more significant surgery to remove them.
What to ask
Many of our families have children who have
gone through the distraction process as an infant, toddler, or older child. They
are willing to share their experiences with you. If you would like to talk with
one of them, please
Pierre Robin Network
Quincy, IL 62305
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