Ankyloglossia in Australia: Parental Experiences of Treatment

Abstract

Objectives

To investigate the perspectives of parents on their treatment decisions for the management of their child’s ankyloglossia (tongue-tie).

Method

Ninety-eight parents across Australia responded to an online survey about their perspectives on treatment for their infant’s ankyloglossia. Descriptive statistics were used to analyse quantitative data, and thematic analysis was used to describe qualitative data.

Results

Participants were from all Australian states and territories. Ankyloglossia was most often diagnosed by lactation consultants and midwives within the first week of life, with nearly all cases identified during the first year. While all parents were offered non-surgical treatments, most reported persistent feeding difficulties. Surgical treatment, typically conventional or laser frenotomy, was offered to almost all parents. Surgical intervention was successful for most infants, though spontaneous recovery of feeding difficulties without intervention was also observed. Key reasons for declining surgery included positive experiences with non-surgical treatment, concerns about surgical risks, and conflicting information. Overall, parents were more likely to consent to surgical than non-surgical treatment in the future, though experiences of shared decision-making were rated more positively with non-surgical providers.

Conclusions

Parental involvement and engagement in managing infant ankyloglossia was linked to positive perceptions of outcomes. Surgical treatment showed favourable results, though some infants improved without intervention, underscoring the need for standardised protocols. Findings emphasise the need for clear communication and shared decision-making to support parents and reduce unnecessary treatment.

Keywords

infant ankyloglossia feeding frenotomy treatment

Introduction

Ankyloglossia, commonly referred to as tongue-tie, is a congenital oral anomaly characterised by an abnormally short or tight lingual frenulum or midline fold that can restrict tongue movement and function (Australian Dental Association, 2020; Mills et al., 2019; Walsh & McKenna Benoit, 2019). Importantly, it has been well established in recent literature that the presence of a visible or palpable lingual frenulum is a normal finding in young children and, on its own, should not be classified as tongue-tie unless it is associated with functional impairment (Haham et al., 2014). The impacts of ankyloglossia in infants are largely centred around breastfeeding and feeding in general. Cordray et al. (Cordray et al., 2023), in a systematic review and meta-analysis, found strong associations between ankyloglossia and indicators of unsuccessful breastfeeding, including infant symptoms such as poor latch, feeding fatigue, poor weight gain, and gastroesophageal reflux, as well as maternal symptoms such as nipple pain, breast engorgement, and nipple damage. Further, feeding-related challenges associated with ankyloglossia can take a substantial emotional toll, often evoking maternal feelings of desperation, guilt or shame, and disappointment, and have been shown to affect the maternal–child bond, thereby likely contributing to postpartum depression (Edmunds et al., 2013; Hill et al., 2021; Waterman et al., 2021). In addition to feeding difficulties in infants and young children, ankyloglossia has historically been linked to speech and oral development (Colombari et al., 2021; Zhao et al., 2024). However, recent literature shows no difference in tongue mobility or speech outcomes in young children regardless of intervention in infancy, and therefore does not support surgical treatment during this period solely to enhance later speech production (Salt et al., 2020; Zhao et al., 2024).

The reported prevalence of ankyloglossia in Australia has not been extensively recorded. However, estimates range from approximately 4.2% to 11%, based on international studies (Segal et al., 2007). A study conducted in Central Australia found that 10.2% of infants under two years old were diagnosed with ankyloglossia, with a higher prevalence observed in males (Akbari, Bogaardt, & Docking, 2023). Prevalence across Australia could vary due to differences in diagnostic criteria and reporting practices (Akbari, Bogaardt, and Lau et al., 2023; Segal et al., 2007). A variety of diagnostic and classification tools exist to evaluate and categorise ankyloglossia based on both appearance and functional impact. However, to date, no clinical consensus has been reached regarding the optimal tool for use across the Australian healthcare system.

The primary treatment types available can be classified into two approaches: non-surgical treatments and surgical treatments. Non-surgical treatments are often provided by trained health professionals including International Board-Certified Lactation Consultants (IBCLCs), midwives, child health nurses, speech-language pathologists, and/or alternative health providers such as chiropractors and osteopaths (Australian Dental Association, 2020; Walsh & Tunkel, 2017). These treatments encompass feeding support, such as positional changes, latch optimisation, and the use of external tools like nipple shields or supplementary nursing systems. They also include alternative approaches such as bodywork and craniosacral therapy (Akbari, Bogaardt, and Lau et al., 2023; Australian Dental Association, 2020; Walsh & Tunkel, 2017). Surgical treatment for ankyloglossia primarily involves conventional frenotomy, in which the lingual frenulum is divided using scissors or a scalpel, although a laser may also be used (Aggarwal et al., 2015; Derikvand et al., 2016; Ghaheri et al., 2017, 2018; Khan et al., 2020; Komori et al., 2017; Vishnoi et al., 2014). Other surgical treatments include a frenuloplasty/Z-plasty (Khan et al., 2020). Frenotomy is generally considered a safe and effective procedure for the management of breastfeeding challenges, however, complications such as bleeding, airway obstruction, scarring, and oral aversions have been reported throughout literature (Cordray et al., 2024; Francis et al., 2015; Hale et al., 2020; Jones et al., 2024; Messner et al., 2020; Walsh et al., 2017). Whilst ankyloglossia is a relatively common issue affecting infants, the diagnostic and treatment processes vary considerably (Akbari, Bogaardt, and Lau et al., 2023; Akbari et al., 2024).

Understanding parental experiences is crucial, as parents are often the primary decision-makers in seeking assessment and treatment for ankyloglossia. Their perceptions of symptoms, treatment options, and anticipated outcomes directly influence whether and when intervention is pursued. Exploring the parental experience provides valuable insight into the factors shaping healthcare decisions, highlights potential barriers to accessing care, and can inform strategies to improve support and communication between providers and families (Akbari et al., 2024). The importance of shared decision-making between parents and health professionals has been documented extensively, and is vital to making health care decisions that are individualised to the patient and incorporate their values and preferences (Agency For Healthcare Research and Quality, 2024; Hargraves et al., 2020). Further, it has been established that active and tailored support from healthcare professionals, along with coordinated multidisciplinary teamwork, strengthens parents’ role in their child’s healthcare and ensures they receive clear and consistent information (Aarthun et al., 2019).

In Australia, the clinical management of ankyloglossia varies considerably, with healthcare providers adopting a variety of approaches to diagnosis and treatment (Akbari, Bogaardt, and Lau et al., 2023). Despite increasing clinical attention, limited research has examined how parents experience navigating this condition on behalf of their children. Gaining insight into these perspectives and experiences is essential for improving care pathways, enhancing provider-parent communication, and strengthening parental support (Manary et al., 2013). To date, international studies have investigated the perspectives of parents on ankyloglossia management through social media (Grond et al., 2021), however, there have been no Australian studies directly exploring the lived experiences of parents managing the process of ankyloglossia management. Previous research by Akbari et al. (2024) identified significant gaps in the literature regarding how parents understand and experience treatment options and decisions, as well as the ways their interactions with healthcare providers shape these experiences. This novel study seeks to address this gap by examining the experiences of Australian parents whose infants have undergone treatment for ankyloglossia, with particular attention to: (i) their interactions with healthcare providers, (ii) their access to different treatment options, (iii) their perceptions of treatment outcomes, and (iv) their personal experiences throughout the care pathway and beyond.

Method

Ethical approval for this cross-sectional questionnaire study was granted by the University of Adelaide Human Research Ethics Committee (H-2024-114).

Survey Design

A survey was developed using Qualtrics software (https://www.qualtrics.com/) to explore treatments of ankyloglossia experienced by Australian parents, and their outcomes as reported by parents. All questions in the survey were categorised into four blocks that included multiple choice and open response question formats. The blocks explored parents’ background, treatment experiences, outcomes of treatment, research they had conducted and the provision of education. Open response questions were included.

Quantitative data regarding parental perspectives of treatment outcomes was compiled by utilising multiple choice questions, and the Likert Scale 1–5 (1 – very ineffective, 3 – neutral, and 5 – very effective). Parents were asked to consider time frames for symptom resolution, education they received regarding various treatment options and their experiences with the health professionals involved in their infant’s care.

Data Collection

Data for this study was collected using a survey developed and hosted on Qualtrics software (https://www.qualtrics.com/). Australian parents of infants diagnosed with ankyloglossia were invited to participate in the anonymous online survey via a Qualtrics web link. Participants were recruited through multiple channels, including email, newsletters from professional bodies, interest groups, and social media platforms focused on paediatric feeding, ankyloglossia, and related topics. Additionally, recruitment efforts were supported by health professionals from speech pathology, midwifery, and nursing departments in hospitals and community health centres across Australia. The survey was distributed using a link and QR code generated by Qualtrics, which was non-specific to individual participants. An email outlining details of the study and containing the survey link was sent to moderators of relevant interest groups and managers of health services, requesting further dissemination to staff, colleagues, and group members. The survey link was also shared on social media platforms and posted on websites of professional organisations. Eligibility criteria included English-speaking parents with an infant diagnosed with ankyloglossia in Australia.

Data Analysis

Survey responses were exported into IBM SPSS Statistics for Windows (version 26) for quantitative analysis. Descriptive statistics were used to summarise overall trends and patterns within the data. Group differences were analysed using chi-squared tests for categorical variables, and Mann–Whitney U tests for ordinal or non-normally distributed continuous variables. All statistical tests were two-tailed, with significance defined as p = 0.05. A statistical power level of 0.80 was applied to ensure sufficient sensitivity to detect meaningful differences.

Qualitative data gathered from open-ended survey questions were entered into Microsoft Excel for the purpose of content analysis. This analysis focused on exploring parents’ experiences related to the management of their child’s ankyloglossia. A thematic analysis was undertaken to identify common themes and significant patterns within the responses. Emergent themes were coded and organised to capture core experiences and perspectives, offering valuable insight into the treatment decisions made by parents regarding their infant’s ankyloglossia.

Results

Study Sample

A total of 132 survey responses were collected, with 34 excluded due to ineligibility, incomplete responses, or lack of consent to continue with the survey. Data from the remaining 98 eligible parent respondents are presented.

The respondents were divided into four treatment groups, with 26 (26.5%) participants in the no intervention group, 5 (5.1%) in the non-surgical treatment group, 21 (21.4%) in the surgical treatment group, and 46 (46.9%) in the non-surgical and surgical dual treatment group.

Demographic characteristics of the participants are summarised in Table 1. Responses were received from all eight Australian states and territories, with the majority residing in Queensland (30.6%) or New South Wales (22.4%). In terms of geographic classification, 68 respondents (69.4%) were located in metropolitan or regional centres (MM1–2), while 30 respondents (30.6%) lived in rural or remote areas (MM3–7). There was no significant difference between treatment groups across the states of Australia (Chi-square; p = 0.407), nor across geographical classifications (Chi-square; p = 0.430).

Table 1.

Location Information of Participants

	N	%
State or territory
QLD	30	30.6
NSW	22	22.4
VIC	17	17.3
NT	13	13.3
WA	6	6.1
SA	5	5.1
ACT	3	3.1
TAS	2	2.0
Participant location (Modified Monash category)
Metropolitan/regional city (1–2)	68	69.4
Rural and remote (3–7)	30	30.6

Ankyloglossia Diagnosis

Of the parents who responded to the survey, 40 (40.8%) parents reported that their infant was diagnosed with ankyloglossia in their first week of life, with 95 (96.9%) parents reporting in their first year of life. There were no significant differences in ages of diagnosis across the four treatment groups (Kruskal–Wallis; p = 0.510), and no significant differences in ages across Australian states and territories (Chi-square; p = 0.08). There were statistically significant differences in the age of ankyloglossia diagnosis across geographical locations, with infants in metropolitan areas being diagnosed earlier than in rural or remote areas (Chi-square; p = 0.018).

The primary symptoms of ankyloglossia exhibited by infants in this study, as reported by their parents, were difficulties with feeding including poor latch and suck (68; 30%) and the appearance of the tongue (50; 22%).

The health professionals providing an ankyloglossia diagnosis to infants in this study were primarily lactation consultants (including IBCLCs) (53; 34%), midwives (32; 20.5%), dentists (17; 10.9%) and paediatricians (12; 7.7%). Self-diagnosis was also reported amongst parents responding to this study (14; 9%). The diagnostic phase of the respondents’ ankyloglossia experiences is depicted in Table 2.

Table 2.

Diagnostic Information

	N	%
Age at diagnosis
Less than 1 day	17	17.3
2–7 days	23	23.5
8–14 days	5	5.1
Between 2 weeks and 2 months	29	29.6
Between 2 months and 1 year	21	21.4
Between 1 year and 2 years	3	3.1
Primary symptoms of ankyloglossia
Difficulties with feeding (difficult latch, difficult suck, and other)	72	31.7
Appearance of the tongue (heart-shaped tongue or other)	52	22.9
Nipple pain	44	19.4
Health professional’s opinion	40	17.6
Other	17	7.5
No specific reason	1	0.4
Unsure	1	0.4
Health professional providing ankyloglossia diagnosis
Lactation consultant/IBCLC	53	34
Midwife	32	20.5
Dentist	17	10.9
Self-diagnosed	14	9
Paediatrician	12	7.7
Speech pathologist	8	5.1
Nurse	8	5.1
General practitioner	7	4.5
Unsure	2	1.3
Osteopath	2	1.3
Obstetrician	1	0.6

Ankyloglossia Management

Of the 98 parents that responded to the survey, 79 (80.6%) were offered treatment for their infants ankyloglossia, while 19 (19.4%) were not offered any treatment.

Among the 79 parents who were offered treatment, 74 (93.7%) were offered surgical treatment and 57 (72.2%) were offered non-surgical treatment, with 54 (68.4%) parents receiving offers for both types of treatment.

Ankyloglossia Management – Non-Surgical

Among the parents who responded to the survey, 57 (73.1%) were offered non-surgical treatment, while 21 (26.9%) were not. Of those offered non-surgical treatment, 51 (89.5%) consented, 1 (1.8%) was unsure, and 5 (8.8%) did not consent to the treatment for their infant. Positioning changes (51; 33.6%), support with latching (44; 28.9%) and equipment changes (32; 21.1%) were the most common non-surgical treatments provided. All parents were offered multiple types of non-surgical treatment, with the majority receiving offers of either two options (29.8%) or three options (35.1%)

Of the 51 parents who consented to non-surgical treatment, 23 (45%) reported involvement of both a midwife and lactation consultant. Non-surgical care was most often provided by lactation consultants (39; 38.2%) and midwives (29; 28.4%), with additional involvement from chiropractors (8), osteopaths (8), nurses (7), doctors (5), speech pathologists (2), and dentists (2). Two parents were unsure of the provider. Overall, 70.6% of parents reported that two or more professionals were involved in their infant’s non-surgical care.

Parents were asked to rate how effective they believe the non-surgical treatment for their child’s ankyloglossia was on a Likert scale of 1 to 5. On these scales 1 indicated ‘very ineffective’ and 5 indicated ‘very effective’. The mean rating of effectiveness reported by parents was 2.46 (SD ± 0.994, min–max 1–5). There were no significant differences in parental-reported effectiveness of non-surgical treatment across geographical categories in Australia (Kruskal–Wallis; p = 0.232).

Ongoing symptoms following non-surgical treatment were explored in Q26 and Q27 using content and thematic analysis, with 39 (78%) of parents reporting their infant had ongoing symptoms of ankyloglossia following non-surgical treatment, 4 (8%) parents reporting they were unsure, and 7 (14%) parents reporting no ongoing symptoms following non-surgical treatment of their infant’s ankyloglossia. There was no significant difference in prevalence of ongoing symptoms following non-surgical treatment across geographical categories in Australia (Chi-square; p = 0.748).

The perspectives of the 39 parents who reported that their infant had ongoing symptoms of ankyloglossia following non-surgical treatment were examined in greater detail through thematic analysis, and these symptoms were grouped into the following key themes: latching difficulties, pain and nipple damage, poor weight gain, air intake and reflux and tongue restriction.

Significant difficulty with latching was reported by 28 (71.8%) participants, despite attempts to address the issues, which in turn affected their ability to breastfeed or bottle-feed successfully. One participant shared that their baby was ‘unable to latch and breastfeed properly, unable to take a bottle’. (P7). Another parent noted persistent difficulties, stating that their child had ‘trouble latching/feeding, fussing, [and] biting’ (P5). For some families, latching difficulties remained unresolved despite various interventions. One parent reported that their baby experienced ‘poor latch and [was] sick, restricted tongue lateralisation, [with an] obvious heart-shaped tongue tip due to short frenulum’ (P48).

Pain during breastfeeding was a common concern among respondents, with some experiencing significant nipple trauma. One participant described the challenge succinctly, stating they had ‘pain with breastfeeding’ (P2). Another explained that their baby’s poor latch resulted in ‘++ nipple pain and bleeding’ (P9), making breastfeeding particularly difficult. Some participants described ‘continued nipple pain and damage’ (P94) that did not resolve over time. These experiences highlight the physical toll of breastfeeding difficulties, which often required ongoing management.

Concerns around inadequate weight gain and inefficient feeding were frequently mentioned, often linked to poor latch and prolonged feeding sessions. One parent reported that their baby was ‘not gaining weight’ (P7), while another described how their infant experienced ‘difficult feeding, reduced weight gain’ (P15). In some cases, ineffective feeding led to exhaustion for both the infant and caregiver. One participant described how their baby would ‘work so hard to feed that [they’d] fall asleep after 20 to 30 minutes and wake up starving’, creating a ‘cycle of constant feeding with little improvement’ in intake (P80).

Problems with excessive air intake during feeding were highlighted by 13 respondents, leading to gas, reflux, and discomfort for their infants. One parent described how their baby experienced ‘painful gas, nipple pain, falling off, choking on milk and spluttering, [and] distress’ (P32). Another explained that their child had ‘wind from sucking in air from not latching properly’ (P76), further exacerbating feeding difficulties.

Reflux was also a concern, with one participant reporting that their baby had ‘latch issues, reflux due to excess air, [and] nipple pain’ (P76). Another parent described how feeding difficulties led to ‘constant and severe wind’ (P30), while another observed ‘mucousy poos, severe gas pain, vomiting, clicking at breast, and difficulty extracting milk from breast’ (P91). These feeding-related complications significantly impacted both infant comfort and parental stress levels.

Several participants noted that their infants had restrictions in tongue movement, which contributed to feeding difficulties. One parent reported that their baby was ‘unable to poke tongue out’ (P20), while another described ‘poor tongue protrusion/elevation’ (P33). One participant explicitly linked their child’s feeding struggles to tongue restriction, explaining that their baby had ‘restricted tongue lateralisation [and an] obvious heart-shaped tongue tip due to short frenulum’ (P44). These findings highlight the structural challenges that can complicate breastfeeding and require further assessment.

For some families, non-surgical intervention did not lead to significant improvements. One participant noted that their baby’s feeding challenges remained the ‘same as at diagnosis’ (P27), indicating that despite efforts to address the issue, their difficulties persisted.

When asked whether they would consent to their infant receiving the same non-surgical treatment again, using a 5-point Likert scale (1 = ‘extremely unlikely’ and 5 = ‘extremely likely’), just over half of parents (53.4%) indicated they would be ‘likely’ or ‘extremely likely’ to do so, while 11.1% reported they would be ‘unlikely’ or ‘extremely unlikely’. The remaining 16 parents (35.5%) expressed a neutral stance (mean 3.62, SD ± 0.994, min–max 1–5).

Parents who declined non-surgical treatment after it was offered were asked to indicate the time taken for their infants’ ankyloglossia-related feeding difficulties to resolve. Forty percent reported resolution within one week, while 20% reported resolution within 1–2 weeks, another 20% within 2 weeks to 1 month, and the remaining 20% within 1–6 months.

Ankyloglossia Management – Surgical

Surgical treatment was offered to 74 (98.7%) of the 79 parents who were offered any form of treatment. When surgical treatment was offered to parents, 60 (81.1%) parents consented to this treatment, and 14 (18.9%) did not consent. Of the 14 parents who did not initially consent to surgical treatment, 6 (42.9%) then went on to later consent to surgical treatment, and 8 (57.1%) parents opted for their infant to not receive surgical treatment.

The surgical treatments offered to parents for the management of their infants ankyloglossia included conventional frenotomy using scissors or scalpel (57.5%), laser frenotomy (41.4%), and frenuloplasty (1.1%). 13 (17.6%) parents were offered more than one surgical treatment – both laser and conventional frenotomy.

Of the parents who consented to surgical treatment for their infants’ ankyloglossia, 38 parents (38.7%) reported that more than one health professional was involved in the surgical treatment of ankyloglossia for their infant. In this study, the two primary healthcare providers involved in the provision of surgical treatment were lactation consultants (32; 26.2%) and dentists (31; 25.4%). Other health professionals involved in surgical treatment were midwives (12.3%), general practitioners (9.8%), paediatricians (9.0%), paediatric surgeons (8.2%), nurses (3.3%), chiropractors (2.5%), and osteopaths (0.8%). Two parents (1.6%) were unsure of who the health professional was who was involved in their infant’s surgical treatment, and one parent (0.8%) reported that an ‘other’ health professional was involved.

Parents who responded to this survey were asked about why they initially declined surgical treatment when it was initially offered. Responses varied amongst parents; however, the primary themes surrounded a preference for non-surgical approaches, uncertainty, and conflicting professional advice, and the emotional toll to decision-making. Four parents reported that they ‘preferred to try non-surgical options first’ (P57) and that they ‘wanted more time to consider available options’ (P5).

I wanted to try non-invasive treatments first (which did improve things but not get rid of all symptoms), then move on to surgical options next if needed. (P68)

The emotional toll of the decision was highlighted by four parents, who reported ‘uncertainty about the effectiveness of the surgery’ and ‘lack of clarity’ in diagnosis, leading to them feeling ‘unsupported and overwhelmed’, and ‘highly anxious’ (PP80; P91).

I did not want to put my 6-week-old through a surgical procedure as I was highly anxious and nervous. Also, I wanted to try other options before ultimately consenting to surgical treatment. (P91)

Ongoing symptoms following the decision to not receive surgical treatment were explored. Among the seven cases where parents declined surgical treatment for their infants’ ankyloglossia, symptoms resolved spontaneously in five infants. Of these five, four received no interventions, while one received non-surgical treatment. The infants with ongoing symptoms of ankyloglossia were reported to exhibit three primary concerns – delayed speech, mouth breathing and appearance: ‘Just appearance. Forked tongue however it did not actually cause issues, just an appearance fortunately’ (P14).

When asked about their decision-making process, the eight parents (57.1%) who chose not to pursue surgical treatment for their infant identified three key themes: positive experiences with non-surgical management, concerns about the potential risks of surgery, and challenges in navigating conflicting information.

I didn’t feel I needed it as she was able to breastfeed well and had no issues with solids when she started, nor has she had issues needing to talk. I didn’t want to cause unnecessary surgical treatment if I could avoid it, but I am open to treatment in the future if necessary. (P14)

The IBCLC seemed to diagnose every baby with this in our local area and it seemed to be a ‘fashion’. I did not want to risk an oral aversion due to laser treatment when baby was growing fine and no pain – just shallow latch. (P90)

Overall, parents who chose not to pursue surgical treatment for their infant self-reported high levels of satisfaction with their decision, with 100% of responses being either satisfied (16.7%) or very satisfied (83.3%) (mean 4.83, SD ± 0.408, min–max 4–5).

Parents were asked whether their infants experienced ongoing symptoms of ankyloglossia following surgical treatment and how long it took for these symptoms to resolve. Ten parents (26.3%) reported that their infants continued to have symptoms after surgery, 23 parents (60.5%) indicated that the surgical treatment resolved their infants’ symptoms, and five parents (13.2%) were unsure whether the symptoms had fully resolved. Regarding the timeframe for symptom resolution, just over half of parents (51.1%) reported that their infants’ symptoms resolved within two weeks, and the majority (87.2%) observed symptom resolution within six months following surgical treatment. There was no significant difference in prevalence of ongoing symptoms following surgical treatment across geographical categories in Australia (Chi-square; p = 0.687).

The responses of parents to the question of what their infant’s ongoing symptoms were following surgical treatment were analysed through both content and thematic analysis and overall themes of ongoing feeding challenges, post-surgical outcomes and lingering concerns, and broader functional and developmental impacts emerged. For example, ongoing feeding difficulties were reported by 6 parents, who commented that their infants’ challenges included ‘pain while breastfeeding’ (P37, P45)

Ongoing coordination difficulties and persistent breast aversion (P84)

Post-surgical outcomes and timings were highlighted by parents, with some parents highlighting the potential long-term effects of untreated ankyloglossia.

Late diagnosis led to entrenched poor oral habits (P97)

Later speech pathology identified remaining tongue-tie potentially affecting speech (P43)

When asked whether they would consent to their infant receiving the same surgical treatment again, using a 5-point Likert scale (1 = ‘extremely unlikely’ and 5 = ‘extremely likely’), the majority of parents (80.7%) indicated they would be ‘likely’ or ‘extremely likely’ to consent again, while only 8% reported they would be ‘unlikely’ or ‘extremely unlikely’ (mean 4.38, SD ± 1.013, min–max 1–5). Parents reported being significantly more likely to consent to surgical treatments again compared to non-surgical treatments (mean 4.38, SD ± 1.01 vs 3.62, SD ± 1.07; Mann–Whitney; p < 0.001).

Research and Information Gathering

Parents were asked whether they did their own research about tongue-tie, and 75 parents (81.5%) reported that they did, and 17 parents (18.5%) reported that they did not do their own research. The parents who conducted independent research into ankyloglossia were asked about the type of information, and where they had found the information they had sourced. Options included verbal information about diagnosis and management, written information about diagnosis and management, video information, and other. 68% of parents reported that they had used four or more types of information.

Parents reported finding information through a variety of sources, including friends/family/networks/word of mouth, social media, online forums, video platforms, web pages, and through other sources. A majority of respondents used more than one source for information (median 2; mean 2.4). The most frequent combination was the use of two sources (Friend/Family and Webpages) as reported by 37 of the 47 respondents (78.7%). The types and sources of information sought by parents can be found in Table 3.

Table 3.

Types and Sources of Information Sought by Parents

	N	%
Type of information
Verbal information about diagnosis	44	44.9
Verbal information about management options	40	40.8
Written information about diagnosis	58	59.2
Written information about management options	57	58.2
Video information	18	18.4
Other	13	13.3
Sources of information
Friends/family/networks/word of mouth	47	48.0
Social media	25	25.5
Online forum	11	11.2
Video platform	10	10.2
Web Page	57	58.2
Other	15	15.3

When asked whether the information they found independently was the same as that provided by health professionals, the majority of parents responded ‘somewhat’ (37 parents; 50.7%). Fewer parents responded ‘yes’ (20; 27.4%) or ‘no’ (11; 15.1%).

Parents were asked whether the information they found independently influenced their views on the management of their infant’s tongue-tie. Most parents (43; 58.9%), reported that it did not change their perspective. Nineteen (26.0%) said it did, while 11 (15.1%) were unsure. The perspectives of the 19 parents who reported that their own research influenced their views on managing their infants’ tongue-tie were examined in greater detail through thematic analysis and can be grouped into four key themes: independent research and self-advocacy, conflicting advice and lack of professional support, decision-making and justification for surgery, and distrust and frustration with health professionals.

Parents often relied on both persistence, and their own research to understand tongue-tie and guide treatment decisions. This helped them advocate for their child when professional advice was lacking or inconsistent.

Although there isn’t a lot of evidence from what I could find, it helped me to understand that treating the tongue tie could help with the difficulties I was having with feeding… (P4)

His tongue tie was snipped 3 times… I did my own research on this despite seeing an IBCLC weekly for 12 weeks. (P64)

Parents frequently encountered conflicting advice and contradictory opinions from health professionals, which made decision-making difficult. Some felt dismissed or unsupported by a lack of professional support.

We felt there was judgement and pressure to get the tongue tie cut… medical advice on this was contrary. (P8)

There was lots of conflicting evidence and opinions… extremely difficult when determining whether to go ahead with the release. (P9)

The hospital tried to put it down to difficulty feeding… found a private dentist who did a consultation and then severed both upper lip tie and tongue tie for us. (P48)

Parents’ research and observation often led to choosing surgery as the most effective solution.

Confirmed our decision to proceed with surgical intervention. (P31)

As reported by parents, non-surgical approaches were tried but often insufficient.

After trying non-surgical options for 1–2 months… then knew I needed to proceed with surgical treatment. (P68)

Many parents expressed frustration and distrust toward health professionals, feeling unsupported or misinformed, while others were confused by recommendations provided.

Health professionals know f--- all and it’s really hard to advocate for your child when no one wants to listen to you. (P75)

Discovered laser wasn’t the best option. (P37)

Experiences with Shared Decision-Making

Parents were surveyed within a shared decision-making framework regarding their interactions with health professionals involved in their infant’s surgical and non-surgical care (Agency For Healthcare Research and Quality, 2024). Survey items addressed parental input in treatment discussions, comparison of available options, consideration of values and preferences, and evaluation of treatment decisions. Responses were measured on five-point Likert scales, where 1 indicated ‘strongly disagree’ and 5 indicated ‘strongly agree’. The results showed that parents rated their experiences with non-surgical treatment providers significantly more positively across four out of five dimensions of shared decision-making (Mann–Whitney; p > .050 for four of five questions).

Parental experiences with shared decision-making can be found in Table 4.

Table 4.

Shared Decision-Making Framework

	Non-Surgical (Mean, SD, Min–Max)	Surgical (Mean, SD, Min–Max)	Mann–Whitney; p
Asked for my input during the discussions about the treatment	4.2	3.0	0.012*
	0.99	1.27
	1–5	1–5
Helped me explore and compare my options	3.8	2.8	0.102
	1.24	1.47
	1–5	1–5
Took my values and preferences into account	4.1	3.0	0.048*
	1.22	1.41
	1–5	1–5
Helped me reach my decision for treatment	4.1	2.7	0.006*
	1.20	1.03
	1–5	1–5
Helped me to evaluate my treatment decision	3.9	2.5	0.038*
	1.36	1.76
	1–5	1–5

signifies statistical significance.

Discussion

This study represents the first focused investigation into the lived experiences of Australian parents regarding the management of ankyloglossia in their infants. This study explored the experiences of Australian parents whose infants have undergone treatment, with particular attention to their interactions with healthcare providers, access to different treatment options, perceptions of treatment outcomes, and overall experiences throughout the care process. By directly gathering parental perspectives, the study reports detailed insights that may not have been communicated to health professionals during clinical care. Furthermore, the findings provide a comprehensive understanding of parents’ experiences throughout the ankyloglossia management journey, highlighting factors that shape their decision-making, perceptions, and satisfaction with care.

This study further underscores the considerable diversity among health professionals involved in managing ankyloglossia in Australia, and illustrates the large range of practitioners providing both non-surgical and surgical interventions, as previously reported in Australia (Akbari, Bogaardt, and Lau et al., 2023; Akbari et al., 2024; Australian Dental Association, 2020). Such diversity among health professionals supports the reports of variation in clinical practice of ankyloglossia management, thus highlighting the absence of standardised guidelines both in Australia and internationally. By documenting these detailed consumer perspectives, this study strongly supports the urgent need for evidence-based guidelines for all health professionals involved in ankyloglossia care, in order to ensure consistent and optimal outcomes for children with ankyloglossia.

The outcomes of non-surgical treatment were reported by parents in this study. Over three quarters of parents reported their infant had ongoing symptoms of ankyloglossia following non-surgical treatment. These ongoing symptoms largely centred around continuing feeding difficulty, including poor latching ability, nipple pain when breastfeeding, and poor weight gain. These findings align with primary issues reported by parents with infants diagnosed with ankyloglossia (Akbari, Bogaardt, & Docking, 2023; Cordray et al., 2023; Francis et al., 2015). Parents reported that non-surgical treatments improved symptoms for their infant, however, did not resolve all symptoms, leading them to then pursue surgical treatment. Notably, despite most parents reporting persistent symptoms in their child following non-surgical treatment, the majority indicated that they would consent to non-surgical intervention again. This may highlight a parental desire for a holistic approach to ankyloglossia management, despite an earlier study suggesting a parental preference for surgical treatments (Akbari et al., 2024). Further, whilst the importance of a holistic approach to the management of ankyloglossia has previously been highlighted, including non-surgical and surgical treatments [33], the findings in this study question the efficacy of non-surgical treatments alone in the management of ankyloglossia.

The health professionals involved in the surgical management of ankyloglossia in this study are consistent with those identified in previous Australian literature, with lactation consultants and dentists being reported as the primary providers (Akbari et al., 2024). A recent study by Diercks et al. (Diercks et al., 2025) highlighted the increasing role of dentists in performing these procedures. However, these findings, in an Australian context, were notably lacking otolaryngologists and surgeons - providers that are commonly reported performing surgical procedures for ankyloglossia overseas.

Decisions surrounding consent to surgical treatments were explored amongst parents in this study, and highlighted the uncertainty faced by parents when making decisions about their infants’ care. Some parents reported feeling uncertain about the effectiveness of surgical treatment and feeling unsupported and overwhelmed, leading them to decline surgical treatment for their infant. Parental perspectives on non-treatment were explored, with responses often reflecting concerns about the risks of surgery. Although the literature reports relatively low risks associated with surgical treatment for ankyloglossia and demonstrates its efficacy, it remains essential that these risks are discussed as part of informed decision-making between healthcare providers and parents (Agency For Healthcare Research and Quality, 2024; Buryk et al., 2011; Cordray et al., 2024; Hale et al., 2020). Interestingly, while just over one quarter of parents reported that their infants continued to experience symptoms following surgical treatment, the vast majority nevertheless indicated they would choose surgery again if faced with the same decision. This suggests that, for many parents, the perceived benefits of surgery outweighed any ongoing challenges. In contrast, parents who declined surgical intervention expressed high levels of satisfaction with their choice, reflecting confidence in their decision-making and acceptance of non-surgical pathways.

The outcomes of surgical treatment were examined in this study, with parents reporting a high rate of symptom resolution following frenotomy. These findings align closely with the positive outcomes consistently documented in other settings worldwide, reinforcing the effectiveness of frenotomy in alleviating symptoms related to ankyloglossia (Cordray et al., 2024; Koento et al., 2022). Parents described improvements in key areas such as latching, maternal nipple pain, and infant weight gain, highlighting the breadth of benefits attributed to surgical management of ankyloglossia previously reported in literature (Akbari et al., 2024; Cordray et al., 2024; Jones et al., 2024). Importantly, the timelines associated with these improvements varied: over half of parents reported noticeable changes within two weeks of the procedure, while the vast majority observed resolution of symptoms within six months. Despite the clinical importance of such information, literature describing the timeframe of symptom resolution following frenotomy remains scarce for international settings and absent in the Australian context, with limited papers reporting on timeframes of outcomes (Tseng et al., 2024). This positions the present study as the first to provide empirical data on both the effectiveness and the temporal course of post-surgical outcomes for infants with ankyloglossia in Australia.

Although surgical intervention was associated with generally positive outcomes in this study, instances of both spontaneous symptom resolution and ongoing symptom persistence were also documented. In some infants offered surgical treatment for ankyloglossia, feeding difficulties resolved without intervention, pointing to the risk of misdiagnosis, over-diagnosis and unnecessary procedures (Akbari, Bogaardt, & Docking, 2023; Akbari, Bogaardt, and Lau et al., 2023; O'Connor et al., 2022). These findings reinforce the need for clearer diagnostic and management guidelines both in Australia and internationally. This study also identified ongoing feeding difficulties after surgical treatment, along with less commonly reported issues in the ankyloglossia literature, including sleep and speech challenges. Recent evidence suggests that young children show no significant differences in tongue mobility or speech outcomes, irrespective of whether they received tongue-tie intervention during infancy, and as a result, surgical treatment in infancy is not recommended solely to improve future speech development (Salt et al., 2020).

Findings from this study reinforce the importance of actively involving parents in decision-making and engaging in meaningful, transparent dialogue to ensure that healthcare decisions reflect what matters most to families (Aarthun et al., 2019; Hargraves et al., 2020). Parents reported considerable emotional strain related to making treatment decisions and coping with outcomes, highlighting the need for health professionals to provide clear and consistent communication throughout the entire care pathway, from diagnosis through to treatment follow-up. Experiences with non-surgical providers were rated more favourably across most domains of shared decision-making, despite parents rating surgical outcomes more positively than non-surgical outcomes. This finding suggests that surgical providers may benefit from strengthening shared decision-making approaches to achieve optimal outcomes for infants and their caregivers. Ensuring that parents feel informed, supported, and confident in their understanding of surgical procedures and potential outcomes is critical to fostering trust and improving care experiences (Hargraves et al., 2020).

In this study, the identified themes pertained specifically to those who shared their experiences and may not represent their broader populations. Additionally, as with all qualitative research, interpretation is inherently subjective, and other researchers may have categorised parental perspectives differently (Noble & Smith, 2015; Sutton & Austin, 2015). As individuals from different cultural or national backgrounds may respond differently to Likert scale questions (Lee et al., 2002), open-ended questions were integral to the survey, providing an opportunity for participants to elaborate on their perspectives in greater detail. Given the anonymous nature of the survey link, it was not possible to determine which recruitment streams participants entered through, limiting he ability to identify whether certain groups were over-represented. Consequently, the potential for sample bias, along with the likelihood of recall and social desirability bias must be acknowledged when interpreting these findings.

Conclusion

Findings from this study underscore the importance of parental involvement in all aspects of care for infants diagnosed with ankyloglossia, as this engagement is closely linked to positive perceptions of treatment outcomes across both surgical and non-surgical approaches. Surgical treatment was generally associated with favourable outcomes and high levels of parental satisfaction. However, the spontaneous resolution of feeding difficulties among some untreated infants observed in this study highlights the urgent need for comprehensive and standardised clinical protocols for the diagnosis and management of ankyloglossia to minimise the risks of over-diagnosis and unnecessary intervention. This research further illustrates the central role of parents in the decision-making process, as well as the significant burden that decision-making can place on families navigating complex and sometimes conflicting information. These findings emphasise the responsibility of health professionals to engage in open, meaningful, and thorough discussions with parents about both treatment and non-treatment options, ensuring families are fully informed and supported throughout the care process.

Footnotes

Acknowledgements

The authors would like to thank all the participants for taking part in this study.

ORCID iDs

Donna Akbari

Hans Bogaardt

Kimberley Docking

Ethical Considerations

Ethical approval for this cross-sectional questionnaire study was granted by the University of Adelaide Human Research Ethics Committee (H-2024-114) on August 08, 2024.

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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