Interview with Autumn Read Henning, SLP, founder of Chrysalis Feeding, LLC. Developer of TOTS (Tethered Oral Tissues Specialty) Training.
What kind of assessment do you recommend- informal or formal?
I recommend a conglomeration of formal measures and informal observations.
Components of my assessment include :
- a very in-depth case history
- functional observations with feeding/speech, standardized articulation test (if indicated)
- oral motor assessment (I use Beckman Oral Motor Protocol)
- manual inspection of the oral cavity.
- There are several protocols including the TAP, ATLFF, Carole Dobrich’s Assessment, and Lingual Frenulum Protocol by Martinelli and Marchesan as well. I do these in that order to avoid bias. If truly an oral restriction is present, all signs/symptoms, functional observations, testing, and oral motor findings add up to what I visibly see and feel in the mouth.
How do you determine severity of the tongue and/or lip tie and if a child needs surgical intervention?
Severity is based upon the level of impaired function, symptoms, and impact on quality of life. One of the common misconceptions is about the classification of tongue and lip ties. I tell my patients that this is only a descriptor of the placement of the attachments and not like cancer where class 4 is worse than class 1. I may have a child failing to thrive with a class 1 tie or a child that is a picky eater with a class 4 tie and vice versa.
In your experience, what types of issues are you treating when you recommend a revision?
This can vary greatly!
- In breastfeeding, unsustained latch, shallow latch, falling asleep at the breast, extended feedings, frequent short feeds, poor weight gain, clicking, anterior loss, gagging
- GI symptoms (GER, gas, hiccups), recurrent thrush/ mastitis, combative behaviors, and maternal nipple pain/trauma.
- In bottle feeding, clicking, anterior loss, extended feedings, poor weight gain, GI symptoms (GER, gas, hiccups), frequent short feeds, collapsing bottle nipple, combative behaviors, and gagging.
- In solid feeding, difficulty transitioning to purees and table foods; poor intake and weight gain, gagging, refusal, packing, expulsion, typically has difficulty with fibrous, multi-textured foods. These dysfunctions place babies and children at risk for choking and aspiration due to lack of oral control of the bolus.
What exactly is the relationship between a tongue tie and reflux? Do you recommend any kind of evaluation first to rule out a structural or motility issue in the GI tract?
I see the following relationship with GER and ties.
1) AIR (Aerophagia Induced Reflux) Dr. Scott Siegel just published a study on this recently. Basically due to poor seal on the breast or bottle, the baby takes in a lot of air. The air in the stomach causes increased pressure and therefore GER-like symptoms.
2) Impaired motility is theory resulting poor vagal nerve stimulation, it hypothesized that if the tongue cannot reach the palate, and the vagus nerve regulates digestion, motility may be impaired causing back up in the system and GER-like symptoms. Similarly, poor primary lingual peristalsis can affect secondary peristalsis throughout the digestive tract (The wave-like motion throughout the digestive tract). The tongue performs the initial peristaltic movement triggering the esophageal peristalsis. When this does not happen correctly, it is hypothesized that there can be backflow and therefore GER-like symptoms.
3) Swallowing partially whole foods (inability to adequately chew) and increased pressure/constipation leads to GER like symptoms.
I work from most likely and least invasive to less likely and most invasive. If I see GER-like symptoms that correlate with tongue function issues with a restrictive lingual frenulum, release and therapy are my first line of thinking to get the tongue working better. Most of the time within a few weeks from release and therapy there is a drastic dissipation of GER-like symptoms. If GER-like symptoms are persisting, I recommend the parent discuss it with their physician for a possible trial of a reflux management medication. Depending on the symptoms, I may recommend they discuss with their physician a gastric scintigraphy or other testing to rule out or treat gastropareisis.
In your experience, are there contraindications to recommending a revision? What about low tone or laryngomalacia?
Very few. More so precautions vs. contraindications. It is a very safe procedure with zero reported adverse effects and no recorded cases of infection. This has been my experience with hundreds of cases I have recommend for release with infants and children who have gone through this procedure. Many that have numerous medical issues. All have improved after release. The degree and rate varies. It is the decision of the provider to weigh these possible contraindications or precautions to minimize risk.
It also depends on how the procedure is done. General anesthesia poses a greater risk to this population than local anesthetic. One precaution I have encountered is patients with heart defects requiring pre-med. Myself, the release provider, and the Cardiologist discussed this beforehand. Another precaution would be a bleeding disorder. It is recommended in cases of possible compromised airway, bleeding disorder, or heart defects that an Otolaryngologist, Hematologist, and Cardiologist be consulted respectively.
How young can an infant undergo revision?
Barring any medical issues or complications, very soon after birth. I would recommend a day or two after, to make sure all is well with baby and work out any initial reasons for difficulty breastfeeding.
Do you feel that every child with a tongue tie should get a revision?
I do not identify the frenulum as a tongue or lip tie if dysfunction is not present. To me, the look of the tongue is not important if there are no functional issues. Barring any medical contraindications (again very few), I do believe that every patient with oral restrictions should be released to optimize oral function and health through the lifespan. My philosophy is that if there is an identifiable and treatable contributing factor to dysfunction, address it! Of course, I can recommend, but the ultimate decision is up to the parent/patient.
Do you ever recommend stretching first (before surgical intervention)? What is required after lip and/or tongue tie in terms of stretching or care?
How long do parents need to stretch? What about exercises?
Yes I do, but not with hopes to “stretch” the restricted frenulum. Studies show the restricted frenulum does not stretch. My prior to release stretching gives parents/patients practice for the aftercare stretching protocol (active wound management). It builds muscle memory, confidence, and reveals any troubleshooting matters to be addressed before release. Wound healing principles demonstrate the need for active wound management, as wet sticky wounds want to contract and stick together. We want healing by secondary intention.
I cannot say for sure, how long parents will need to do the stretching active wound management because every child heals at a different rate. This is why it is important to have regular follow- up during the healing period. Once the white eschar is gone, there is no need for continued stretching, as there are no surfaces that can reattach. Also, the wound healing “stretches” are different from exercises. The stretches inhibit the wound from attaching to itself. The exercises, are targeted to improve function. For active wound management, there are varied types and frequencies of use. Some recommend sweeping, lifting, rolling, or massaging. It is really up to the release provider in conjunction with the oral function professional (IBCLC, SLP, OT). I have my specific protocol for this that has had excellent success in that I’ve had only 2% of cases reattach or need a second release if following my protocol. I recommend continual follow up with an oral function professional to oversee healing and improve function. Some techniques that may be used are positioning, suck training, oral motor exercises, facilitative devices, etc.
What do you recommend when a child does not improve after revision. I have seen children who have had multiple revision but continue to have feeding problems- does that mean the problem was not their tongue the first place?
Release only provides passive range of motion. Release is not an instant fix. I tell my patients that if their child had webbed fingers and the surgeon separated that webbing, the only thing we gain is passive range of motion. Strength, active range of motion, patterns, and endurance all have to be practiced and taught. Our tongue is formed early in gestation and when there is a tongue tie, access to certain neuromuscular movements are impaired. Many compensate and we have to undo compensations a teach proper patterns and movement. If a thorough assessment was done by an oral function professional before release, then yes we know the tongue was a contributing factor. However, we know many times it is not the ONLY contributing factor or cause. Additionally, some send patients for repeat revisions when function does not immediately improve. Please, look at the functional movements in relation to passive range of motion. At times, after release we have great passive range of motion for elevation and lateralization, but it’s not translating into functional movements. That is when therapy is indicated and not another revision.
Why do you think this is such a common recommendation now?
Genetics & Prevalence
- Acevedo, da Fonseca, Grinham, Doudney, Gomes, de Paula and Stanier in 2010 identified ankyloglossia and dental abnormalities in a family. The study demonstrated an autosomal dominant pattern of inheritance.
- In an attempt to explain why males are more affected by ankyloglossia than females, A Korean study by Han, Kim, Choi, Lim, and Han in 2012 identified potential X-linked patterns of inheritance.
- Klockars and Pitkaranta in 2009 identified that the prevalence of ankyloglossia in the general population is 4 to 5% and that inheritance is also in an autosomal dominant pattern.
These studies demonstrate that there is a genetic predisposition towards ankyloglossia. My own observation in my patients is that 70% or more of cases with tongue tie have a known relative who also has ankyloglossia or a history of ankyloglossia. I’m guessing that many more have a family member with a tongue tie, but has not been diagnosed or is unknown to family members. As is the case with many genetic disorders, the autosomal dominant gene continues to be passed down from generation to generation and being expressed more often since it is dominant. With the prevalence, this means 5/100 or 1/20 people have tongue tie and it is more likely in males! Additionally, there is some emerging research on those midline defects being correlated and more common in those with MTHFR.
Return to Breastfeeding
Recently, there have been many initiatives driven by research-based benefits of breastfeeding to increase numbers of babies being breastfed. One such initiative is the Baby-Friendly designation in hospitals. As we learn more about the benefits of breastfeeding and breast milk, more health entities are advocating for breastfeeding. Since the primary mechanical success of breastfeeding is posterior tongue elevation (not as important in bottle feeding), it is exposing more breastfeeding difficulties in babies that are tongue tied.
Emerging Information to Refute Myths
There are a lot of myths about tongue tie. One of my personal favorites is “if you can stick your tongue out, you can’t be tongue tied.” My response to that is that we need elevation for proper swallowing and lateralization for chewing. There are very few things we need protrusion for to function. Another myth is that “the frenulum will stretch and the baby or child will grow out of it”. Martinelli, R., Marchesan, I., Gusmao, R., Rodrigues, A., & Berretin-Felix, G. in 2014 showed that the lingual frenulum of tongue tied individuals were composed of type I collagen fibers that are only able to stretch 3%.
It is important to note that tongue tie is not a fad or a new problem. The earliest report of tongue-tie division is by Mark who wrote that “and the string of his tongue was loosened and he spake plain” (Mark 7:35). Midwives used to divide lingual frenulum of newborn babies with a long sharp fingernail according to historical reports. In 1794, a surgeon claimed that tongue-tie can be divided in an infant without any pain to the baby to be taken to the breast immediately. A grooved director was devised more than a century ago for the division of tongue tie.
What is research supporting about tongue revision?
There are several studies supporting release. I’ll share a few with abstracts. Most of the research is on breastfeeding, speech, and dental/sleep/airway considerations. Since this is a feeding blog, I’ll share evidence for release in breastfeeding.
- Steehler, M. W., Steehler, M. K., & Harley, E. H. (2012). A retrospective review of frenotomy in neonates and infants with feeding difficulties. Int J Pediatr Otorhinolaryngol. doi: 10.1016/j.ijporl.2012.05.00
Based on maternal observations, when frenotomy is performed on neonates with ankyloglossia and feeding difficulties in the first week of life, there is more benefit than when it is performed after the first week of life. The population of patients with ankyloglossia is predominantly male with a high familial/genetic correlation associated with the phenotypic trait. Frenotomy for ankyloglossia demonstrates a high degree of maternal satisfaction, is well tolerated and has been shown to improve breastfeeding and decrease pain and difficulty associated with breastfeeding.
- Berry, J., Griffiths, M., & Westcott, C. (2012). A double-blind, randomized, controlled trial of tongue-tie division and its immediate effect on breastfeeding. Breastfeed Med, 7, 189-193. doi: 10.1089/bfm.2011.0030
There is a real, immediate improvement in breastfeeding, detectable by the mother, which is sustained and does not appear to be due to a placebo effect.
- Buryk, M., Bloom, D., & Shope, T. (2011). Efficacy of Neonatal Release of Ankyloglossia: A Randomized Trial. Pediatrics, 128(2), 280-288. doi: 10.1542/peds.2011-0077
We demonstrated immediate improvement in nipple-pain and breastfeeding scores, despite a placebo effect on nipple pain. This should provide convincing evidence for those seeking a frenotomy for infants with signficant ankyloglossia.
- Hogan, M., Westcott, C., & Griffiths, M. (2005). Randomized, controlled trial of division of tongue-tie in infants with feeding problems. J Paediatr Child Health, 41(5-6), 246-250. doi: JPC604 [pii]10.1111/j.1440-1754.2005.00604.x
This randomized, controlled trial has clearly shown that tongue-ties can affect feeding and that division is safe, successful and improved feeding for mother and baby significantly better than the intensive skilled support of a lactation consultant.
- Geddes, D. T., Langton, D. B., Gollow, I., Jacobs, L. A., Hartmann, P. E., & Simmer, K. (2008). Frenulotomy for breastfeeding infants with ankyloglossia: effect on milk removal and sucking mechanism as imaged by ultrasound. Pediatrics, 122(1), e188-194. doi: peds.2007-2553 [pii]10.1542/peds.2007-2553
Infants with ankyloglossia experiencing persistent breastfeeding difficulties showed less compression of the nipple by the tongue postfrenulotomy, which was associated with improved breastfeeding defined as better attachment, increased milk transfer, and less maternal pain. In the assessment of breastfeeding difficulties, ankyloglossia should be considered as a potential cause.
- O’Callahan, C, Macary, S., & Clemente, S. (2013). The effects of office-based frenotomy for anterior and posterior ankyloglossia on breastfeeding. International Journaal of Pediatric Otorhinolaryngology, 77 (5), 827-832.
Breastfeeding difficulties associated with ankyloglossia in infants, particularly posterior, can be improved with a simple office-based procedure in most cases. The diagnosis and treatment of ankyloglossia should be a basic competency for all primary care providers and pediatric otorlaryngologists.
- There are no studies on solid feeding and tongue tie release.
I have hundreds of case studies and I am looking for research partners to analyze the gold mine of data I have, so we can get this in the literature. Just remember, evidence based practices had to come from someone doing it first! Do not discount practice based evidence.
The body of research currently needs more well-designed studies. It is important to note why there are gaps in the research. Here are my general thoughts:
-Lack of universal or operational definition
-No standardized assessment protocol, though a few validated tools
-Varied signs/symptoms and presentations
-Varied provider release techniques
-Varied access to follow-up care (IBCLC, SLP, OT, bodywork modalities)
-Varied active wound management protocols
Acevedo, A. C., da Fonseca, J. A., Grinham, J., Doudney, K., Gomes R. R., de Paula, L. M., & Stanier, P. (2010). Autosomal-dominant ankyloglossia and tooth number anomalies. Journal of Dental Research, 89(2), 128-132.
Berry, J., Griffiths, M., & Westcott, C. (2012). A double-blind, randomized, controlled trial of tongue-tie division and its immediate effect on breastfeeding. Breastfeed Med, 7, 189-193. doi: 10.1089/bfm.2011.0030
Buryk, M., Bloom, D., & Shope, T. (2011). Efficacy of Neonatal Release of Ankyloglossia: A Randomized Trial. Pediatrics, 128(2), 280-288. doi: 10.1542/peds.2011-0077
Geddes, D. T., Langton, D. B., Gollow, I., Jacobs, L. A., Hartmann, P. E., & Simmer, K. (2008). Frenulotomy for breastfeeding infants with ankyloglossia: effect on milk removal and sucking mechanism as imaged by ultrasound. Pediatrics, 122(1), e188-194. doi: peds.2007-2553 [pii]10.1542/peds.2007-2553
Han, S. H., Kim, M. C., Choi, Y. S., Lim, J. S., & Han, K. T. (2012). A study on the genetic inheritance of ankyloglossia based on pedigree analysis.Archives of Plastic Surgery, 39(4), 329-332.
Hogan, M., Westcott, C., & Griffiths, M. (2005). Randomized, controlled trial of division of tongue-tie in infants with feeding problems. J Paediatr Child
Health, 41(5-6), 246-250. doi: JPC604 [pii]10.1111/j.1440-1754.2005.00604.x
Klockars, T., & Pitkaranta, A. (2009). Inheritance of ankyloglossia (tongue-tie). Clinical Genetics, 75(1), 98-99.
Martinelli, R., Marchesan, I., Gusmao, R., Rodrigues, A., & Berretin-Felix, G. (2014). Histological characteristics of altered human lingual frenulum. International Journal of Pediatrics and Child Health, (2), 9-5.
O’Callahan, C, Macary, S., & Clemente, S. (2013). The effects of office-based frenotomy for anterior and posterior ankyloglossia on breastfeeding. International Journaal of Pediatric Otorhinolaryngology, 77 (5), 827-832
Siegel, S. (2016). Aerophagia Induced Reflux in Breastfeeding Infants With Ankyloglossia and Shortened Maxillary Labial Frenula (Tongue and Lip Tie). Int J Clin Pediatr. 5(1):6-8
Steehler, M. W., Steehler, M. K., & Harley, E. H. (2012). A retrospective review of frenotomy in neonates and infants with feeding difficulties. Int J Pediatr Otorhinolaryngol. doi: 10.1016/j.ijporl.2012.05.00
Autumn R. Henning, MS, CCC-SLP, is a certified and licensed Speech-Language Pathologist. She graduated Magna Cum Laude from the University of Kentucky with her Bachelor’s and Master’s Degrees in Communication Disorders.
Autumn is a recognized provider by Ankyloglossia Bodyworkers, has been a guest presenter for Creating a Care Plan for Tongue Ties, delivered a webinar through Innara Health entitled Tethered Oral Tissues: What’s a Therapist to do?, and will be delivering a webinar through Gold Learning’s Tongue Tie Symposium entitled Tethered Oral Tissues: Beyond Breastfeeding. She has served on local breastfeeding professional panels and delivered numerous presentations to parents and medical professionals.
Autumn has completed specialty continuing education including Beckman Oral Motor, Vital Stim, and Foundations in Myofascial Release for Neck, Voice, and Swallowing as well more than a dozen professional courses on pediatric feeding and related topics. She is pursuing further education in the areas of lactation and orofacial myology.
Autumn has experience working in the school system, early intervention, an ABA center and outpatient clinics including a nationally award-winning intensive feeding program. Autumn currently specializes in pediatric feeding at a non-profit outpatient clinic in Greenville, SC and serves on the board. She is Founder of Chrysalis Feeding, LLC and travels presenting her knowledge to colleagues across the country. The flagship course is TOTS (Tethered Oral Tissues Specialty) Training that will launch this Fall. In this cutting edge continuing education course, participants will learn the E3 model of care for tethered oral tissues. This includes relevant background information on how tethered oral tissues affect oral function from birth to maturity. The course format includes lecture, video/photograph examples, case studies, pre and post assessment activities, demonstrations, and hands-on application of techniques in an interactive atmosphere where questions and discussion are welcomed.
All of these topics covered in this blog and more are in my upcoming courses!
Upcoming TOTS (Tethered Oral Tissues Specialty) Training Courses:
Lexington, KY October 27-28, 2016
Las Vegas, NV January 7-8, 2017
Contact info: firstname.lastname@example.org
Autumn R. Henning, MS, CCC-SLP, Founder, Chrysalis Feeding, LLC