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Jaw Distraction

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. 

Bioresorbable Devices

Bioresorbable Devices are now available for use in craniomaxillofacial and neurosurgical skeletal repairs and reconstructions. The ease with which these devices are contoured and fixated has led to newer and
quicker techniques that improve a child's appearance. After bone healing is completed, these devices dissolve in the body and leave no trace. They are made out of polymers that are native to the body. You
can read more at
http://www.sdfaces.com/index_pediatric.htm

Risks

  • Usual risks/complications of anesthesia;
  • If the jaw bone is too small and fragile, it may be impossible to attach the device;
  • The tooth buds may be damaged, affecting the permanent teeth;
  • There can be nerve damage causing paralysis to the mouth;
  • If the screws arenít turned as scheduled, the bone may harden and prevent further lengthening;
  • The surgery may not create the desired result making a second distraction, or trach, necessary.

What to expect/watch for post op

  • There can be a LOT of swelling requiring a child without a trach already to be on a vent for a while until the swelling subsides;
  • A child with a trach should be suctioned frequently to avoid plugs (blood, etc) in the trach- be sure to have a back up trach available and request humidity;
  • A child with a trach should also have his/her trach ties checked post op b/c they may need to be loosened some due to swelling;
  • If there are external pin sites, watch for swelling, redness, draining, etc as possible signs of infection and notify your doctor;
  • The swelling may be significant enough that the childís eyes swell shut, so have other comfort measures available;
  • The child may not be able to take anything by mouth for a while, so be sure he/she is getting adequate nutrition/hydration until a soft diet is permitted.

What to ask

  • What type of pre-op tests will be done? (i.e. x-rays, CT scans, etc.) to decide where to place the device and how much to lengthen the bone;
  • How many surgeries has the doctor done? How old were the patients? Note: fewer surgeons do this procedure on infants, so be sure they have experience (we can help you find a doctor);
  • What type of device (internal or external) does he hope to use (this may change during surgery if needed);
  • Whatís the possibility of additional syndromes being present? (this can affect jaw growth);
  • What other doctors will be on the team/make the decision? ENT, pedidontist, etc.;
  • Has a scope been done to check the airway? Problems lower than the jaw (i.e. tracheomalacia) will not be solved with distraction;
  • Is a sleep study recommended to check for other airway issues?
  • Will my insurance cover this?

Experienced families

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

 

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