Ankyloglossia in Australia: Experiences and perspectives of parents and caregivers

Objectives: To investigate the perspectives and experiences of parents of infants with ankyloglossia in Australia. Method: Two hundred and sixty-seven parents across Australia responded to an online survey including their experiences of having a child with ankyloglossia. Descriptive statistics were used to analyse quantitative data. Results: Participants were from all Australian states and territories, with the majority residing in New South Wales and Victoria. Ankyloglossia diagnoses typically occurred within the first two weeks of life, driven mainly by difficulties with feeding. Lactation consultants played a prominent role in diagnosis, particularly in rural areas. Surgical interventions were common, with frenotomy using scissors or scalpel being the primary treatment. Aftercare recommendations, including stretching the frenotomy wound, were prevalent. Most parents received education about ankyloglossia, primarily through verbal and written information. Parents generally reported high satisfaction with the effectiveness of treatments, favouring surgical interventions. However, satisfaction with health professionals' support did not consistently correlate with the likelihood of consenting to the treatment again, and those who conducted their own research on ankyloglossia expressed lower satisfaction with health professionals' support. Conclusions: The experiences of Australian parents in their infant's diagnosis, management and education of ankyloglossia varied greatly. Clinical guidelines for all relevant health professionals are needed to ensure standardised diagnosis and management processes. In future, this will help guide evidence-based diagnosis and intervention for infants with ankyloglossia.