What the patients and parents do not tell you-recollections from families following external LeFort III midface distraction.

OBJECTIVE

The purpose of this study was to document the experience of patients and parents of patients who had recently undergone LeFort III midface distraction using an external halo-based device.

DESIGN

Cross-sectional study.

SETTING

A craniofacial center in a pediatric tertiary care medical center.

SUBJECTS: Eight children who had undergone midface distraction within 1 year of the interview and their caregivers.

INTERVENTION: Semi-structured interview.

MAIN OUTCOME MEASURE: Transcripts of the interviews were rendered anonymous and analyzed by our multi-disciplinary team. Consistent themes in the subjects' experience during and after midface distraction were identified.

RESULTS

(1) Family participation in the decision to undergo distraction and pre-operative preparation was recognized as valuable, but parents identified that there are inherent limitations; (2) home-care tasks seemed daunting pre-operatively but were easier than expected; (3) discomfort, sleeping, and interaction with peers were considered well accommodated, but feeding was challenging; (4) individualized pre-operative plans for community support was important; (5) parents and patients were impressed by the change in appearance, specifically in the peri-orbital region; (6) access to team members and to parents of patients who had participated in the distraction process was invaluable.

CONCLUSION

External midface distraction is a valuable clinical technique, but requires intensive preparation and support from a multi-disciplinary team. We provide suggestions for consideration by centers initiating and refining patient care plans for this surgery.