What the Patients and Parents Do Not Tell You—Recollections From Families Following External LeFort III Midface Distraction

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ObjectiveThe 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.DesignCross-sectional study.SettingA craniofacial center in a pediatric tertiary care medical center.SubjectsEight children who had undergone midface distraction within 1 year of the interview and their caregivers.InterventionSemi-structured interview.Main outcome measureTranscripts 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) homecare 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.ConclusionExternal 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.

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