Support Awareness & Research on Tongue Tie: A Global Health Issue

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Story

Breastfeeding is primal & natural, but many mothers do not have this natural experience. For those mothers, breastfeeding can be extremely challenging for weeks and even months before they are forced to give up. Many a times even their spouses and families might fail to understand and appreciate these mothers’ struggles. The medical community to whom they turn to for help, may also fail in providing effective breastfeeding support. Their solutions for most breastfeeding problems including low milk supply, sore and/or bleeding nipples and other host of breast conditions (including thrush, blocked ducts, abscess, reflux, colic, fussiness and crying) is dealt with by providing temporary relief by giving medications or infant formula as a quick solution. Extensive available research clearly shows us that milk supply is driven by the baby’s suckling, and effective latch is essential for comfortable breastfeeding – how are we as health care professionals then missing this key point?

Among the conditions that make breastfeeding challenging, a significant link has been found with tongue tie and breastfeeding problems.

The connective tissue or frenum that forms a tongue tie, connects the tongue to the floor of the mouth and can sometimes be tight enough to restrict the normal movement of the tongue – making primal infant feeding equivalent to mountain climbing for the baby. Anecdotal evidence also tells us that babies with a tongue tie are more likely to be prematurely weaned from breastfeeding and may develop anatomical consequences such as high-arched palate or a narrowed airway, as well as compensatory dysfunctions involving chewing and swallowing difficulties, lowered immunity, headaches, neck / back pain, digestive issues and speech difficulties in later life.

The treatment for the tongue tie is a minimally invasive surgery that cuts or ablates the frenum, freeing the movement of the tongue, and thereby restoring the normal tongue function over time. The success of the surgery is dependent on pre-operative and post-operative care which involves skilled lactation support, wound care, suck training, myofunctional exercises and supportive body work such as craniosacral or chiropractic work to increase the function and prevent the reattachment of the oral restriction.

For mothers to access the treatment, they need to encounter a professional who recognises the  impact of oral restriction such as tongue tie and knows how to treat it. This, in most parts of the world does not occur.

Mothers who are unable to breastfeed their babies might see several doctors in search of a solution. They don’t often find a physician who is knowledgeable and experienced and most mothers will give up breastfeeding, choosing to formula feed with a bottle while others will soldier through high levels of pain or attempt to pump milk for prolonged periods of time for their babies optimal health.

Research literature is poor in defining the congenital condition of tongue tie and reporting its prevalence and incidence in the newborn population. The reported incidence is between 3% and  10% in peer reviewed journals around the world. However the growing professional anecdotal evidence and experience is indicative of a higher prevalence as understanding the anatomy and impact of tongue tie has been better studied in clinical practice in over the last decade. This subject is a growing body of science.

Lactation Consultants, who are clinicians as well as mothers of tongue tie babies, form the main voice of the lactation community and are spearheading the global tongue tie movement today. A first-hand experience with breastfeeding challenges gives them a perspective into the issue like no other. These health professionals have been assessing, treating, supporting and advocating for breastfeeding mothers with tongue tied infants for the past 15 to 20 years. The medical community, for the most part, remain oblivious to the movement and remain many years behind.

In India the story is bleaker still, with a tiny number of lactation consultants for such a large population, mothers often don’t receive the help they need. And even after a diagnosis is made, many of them need approval from extended family to make a decision to help their baby. The lack of hard data and education along with poor awareness around tongue ties, in our society as well as the medical community, does not help them make a case with sceptical family members to obtain treatment.

In other parts of the world some mothers complain of an over diagnosis of tongue ties, saying babies are being “snipped” for no reason. But far more mothers will agree that they did not receive help in time and remain resentful, frustrated and heartbroken since they have had to prematurely wean their baby due to sheer lack of real help. Most parents who have made a decision to go ahead with tongue tie treatment say it has ‘changed their lives.’

In the haze and the controversy surrounding this condition and its treatment, one thing is clear: mothers’ voices are being drowned out by professional debate. The need of the hour is research. We have no current data on the prevalence and incidence for tongue tie anywhere in the world. The confounding issue is the need for a tool to evaluate tongue ties which is universally validated and accepted.

The outcome of tongue tie treatment is documented by experts working in the field but correlations with symptoms are based on anecdotal evidence. There is a need to conduct controlled trials.

Our vision is to bring the voices of mothers to the world so they can be heard. This is a journey that started back in 2012. The vision and objective is wide and is two-fold: AWARENESS & RESEARCH

AWARENESS through our documentary film ‘Untying Breastfeeding’ We aim to capture the voices of mothers and professionals from all sides of the debate across the world, to share knowledge of the true picture of this condition today.

RESEARCH through our research project. We aim to gather statistics on the incidence of tongue ties in a healthy newborn population with a sample size of 2000, and study its impact on breastfeeding. We believe this study will expose the reality of this issue and lead to further research. This could be the tipping point of real help for mother and babies who are in need of support.  

We have published the following case studies in the International Journal of Laser Dentistry: "Ankyloglossia: The Diagnostic Dilemma" and "Management of Posterior Ankyloglossia using the Er,Cr:YSGG Laser". These can be downloaded from the Documents section.

We have also conducted our first retrospective cross-sectional cohort study on 60 cases of babies with tongue ties who have received tongue tie treatment in the last 5 years. The preliminary data results are showing approximately above 95% of significant improvement in feeding. This entire study is self-funded and we are in the process of publishing this study in International Paediatric Journals.

This project is being led by Effath Yasmin, an Internationally Board-Certified Lactation Consultant and a Craniosacral Biodynamic Practitioner who has been working with babies with tongue ties since for the last 9 years with great passion. You can read more about Yasmin and her work on www.nourishandnurture.in

Since 2012 Yasmin’s project has been to allow the voice and the stories of these desperate mothers to be heard. Innumerable hours of video footage of interviews with breastfeeding families has been shot over the past few years and has been completely self-funded.

You can read about the scope of the project in the Documents section.

The journey has begun and we now need your support to complete this last leg of our journey of AWARENESS and RESEARCH. The story of the Mothers & babies needs to be told to the world. This is a global health issue. Help us shed light on it!
PROJECT FUND ALLOCATION
PROJECT FUND ALLOCATION
SCOPE OF THE PROJECT - ANNEXURE - RESEARCH
SCOPE OF THE PROJECT - ANNEXURE - RESEARCH
SCOPE OF THE PROJECT - ANNEXURE - AWARENESS
SCOPE OF THE PROJECT - ANNEXURE - AWARENESS
​Ankyloglossia: The Diagnostic Dilemma
​Ankyloglossia: The Diagnostic Dilemma
Management of Posterior Ankyloglossia using the Er,Cr:YSGG Laser
Management of Posterior Ankyloglossia using the Er,Cr:YSGG Laser

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Rs.156,585
raised of Rs.2,200,000 goal

25 Supporters

69 Days to go

Payment options: Online, cheque pickups

Beneficiary: Effath Yasmin info_outline

Supporters (25)

MA
Maha donated $25

All best xx

A
Anonymous donated Rs.7,000
A
Anonymous donated $200

Thank you for all you've done and continue to do to help breastfeeding families

Yo
Yoginis donated Rs.12,560
V
Viji donated Rs.5,000
SR
Sasikala donated $100

Yas - I hope you reach greater heights in your ability to address and treat these issues.😘