Breastfeeding issues and Tongue Tie: What are my options?

Ankyloglossia is a STRUCTURAL impairment that consists of a shortened lingual frenulum. The body of the tongue appears thinned and the borders of the tongue are elevated. The front center edge of the tongue may have a heart shaped indentation. There is a functional impact when the tongue tip cannot contact the upper surface of the mouth when the jaw is nearly closed.

More recently, Tethered Oral Tissues: TOTs (or tongue and lip ties) are being more readily identified and treated by healthcare teams. This diagnosis is not necessarily Ankyloglossia, which is what can be confusing to some providers. If a restriction exists OR if symptoms exist your infant MAY have TOTs.

It is EXTREMELY important to find a health care TEAM to help identify and address TOTS. Asking questions will help guide you in understanding the knowledge of your potential release provide, should you decide to pursue a release.

So what does this mean?

The FUNCTIONAL impact of the lingual frenulum is what matters, not necessarily the appearance.

Release of tongue and lip ties is an elective surgery, parents make the decision based on the information they are presented with. Families should be educated on their options to make the best decision.

Options include:

1. Do nothing

If a family decides to do nothing, it is still important to be educated around how this could potentially impact the child’s future speaking, eating and sleeping. This information can be determined through an Oral Motor Assessment.

2. Oral Motor Therapy (with an OT or SLP)

Without a rean OT or SLP can provide oral motor therapy to maximize a child’s function with available lip and tongue range of motion. There is a possibility that a baby or child may hit a “plateau” in progress without a release depending on how much the restriction is impacting function.The best way to determine if pursuing a release is necessary is to complete a re-evaluation/assessment to note the progress made and if plateau is occurring. It is necessary to have ongoing monitoring of the child’s oral motor function until the therapist feels the child has developed adequate strength/re-train the muscle.

3. Pursue a revision.

For best outcomes work with an occupational therapist/speech language pathologists and lactation support. Therapy is necessary BEFORE and AFTER the procedure.

The 'diamond' shape that results after a release

A frenectomy is a low risk procedure, but it is NOT a “quick fix,” especially in cases of infants and children with complex issues surrounding feeding and speech development.

Oral motor interventions are an important part of oral motor skill development with all ‘types’ of tongue ties. It will be necessary to help strengthen new areas of the mouth that have not been activated. After a surgery the tongue develops more movement (range of motion) but it does not necessarily mean that your infant or child will know how to use their new free tongue. A child is more likely to use their tongue exactly the same way as they did before the surgery. Built up compensatory patterns will also need to be addressed, it is easier to address muscle compensations in young infants since there has not been years of muscles compensating for the lack of tongue movement.

Your occupational therapist will most likely work on full body alignment, since oral movements are refined motor movements and they are distal to the pelvis and trunk. Trunk alignment must be obtained in order to gain in the next practice. Jaw structure and neck elongation are other oral structures that must be in the correct alignment for eating as well. An occupational therapist brings a very unique approach since they are able to address not only the mouth but also the whole body. It is well known that infant feeding is a whole body experience, thus the whole body must be addressed in conjunction with oral motor support.

Why does tongue movement matter?

Our hard palate is easily moldable when we are infants. Why does this matter? Well the tongue helps shape our palate and if the tongue is restricted or not resting in the ideal resting position it will shape the palate differently. A hard palate that is shaped ‘too high’ or ‘too wide’ can impact the child in many different ways, including eating, breathing and sleeping.

The tongue position also impacts the ability of the airway to stay open, if the airway does not develop properly due to the tongue position issues like snoring, sleep apnea, teeth grinding, constant wake ups, hard to settle (without feeding/pacifier/thumb) and mouth breathing. This improper airway development is a potential cause of SIDS. It impacts alertness and focus during the day and consistent deep sleep at night. The tongue also needs full movement to help chew efficiently and swallow safely, along with clearing food from the teeth and lips.

Want to review more information? Take a look here:

• Snoring, mouth-breathing tots more likely to develop behavioral problems - CBS News

• DOI:10.1183/23120541.00043-2016

• https://consumer.healthday.com/kids-health-information-23/attention-deficit-disorder-adhd-news-50/snoring-tots-may-develop-behavioral-issues-later-662390.html

• Chewing, Biting, Clenching, Bruxing and Oral Health - Oral Health Group

The Breastfeeding Dyad:

The breastfeeding infant’s symptoms are JUST AS IMPORTANT as the mother’s symptoms. Most often women are told that if baby is gaining weight that is all that matters. But your symptoms as a mother matter too! Breastfeeding SHOULD NOT be painful. Painful breastfeeding is an indicator that more is going on; it could be issues with latch, a tongue tie, a functional issue, an issue with overactive let down, etc. An oral motor therapist and lactation consultant can help identify the issue and provide tools and strategies to resolve the concerns.

One of the most important newborn and new caregiver tasks is early feeding. As occupational therapists we are skilled in activities of daily living, such as feeding tasks. Not only does the task nourish the baby but it also promotes mother-infant bonding, self-regulation skills and early communication skills for the infant. Feeding is a very complex task and when difficulties are present a skilled specialist, such as an occupational therapist, should always be consulted. Breastfeeding should not be a constant difficult task. Many parents have expressed that feeding difficulties have caused them stress, anxiety and feelings of guilt. Early intervention is vital to establish, increase, and maintain a mother’s supply.

An occupational therapist and lactation consultant are able to help problem solve lactation/breastfeeding difficulties. An occupational therapist, lactation consultant, speech language pathologist, ear, nose and throat doctor or pediatric dentist who specializes in TOTs all are able to help address a tongue tie and lip tie.

Occupational Therapy Role includes:

• Assessing oral motor patterns, swallow function, feeding function, developmental skills and sensory systems to determine what seems to be causing or contributing to the feeding issues

• Providing recommendations for developmentally supportive positioning or activities to avoid additional delays, potentially correct the feeding issue, and/or support the new tongue movements needed post-release, if release is indicated

• Assessing and intervention if there are other facial, neck, trunk or hip muscles that appear tight or are limiting the baby’s function

• Identifying tongue-tie and connecting families with the appropriate professional for a potential release

• Discussing findings with families and making a specific plan tailored to their needs, values, and priorities

• Discussing with the child’s pediatrician and whoever will be consulted to release the tongue if needed

• Providing pre- and post-release tongue exercises to help build new patterns and maintain the range of motion gained by the release (this involves ALL orofacial muscles, not just the tongue!)

• Helping parents identify an appropriate bottle/nipple choice if bottle feeding is desired or if it is needed for a period of time to address weight gain issues

• Addressing the disrupted bonding between parent and baby or referring to the appropriate professional if more intensive therapy is needed

• Education on breastfeeding – habits, positioning, tools, exercises

• Supportive interventions for breastfeeding – pumping, hand expression, bottles, pacifier selection

• Comfort for mom and baby – position and pillow support (e.g., My Brest Friend)

• Real-world practice and teach-back for mom and mom’s partner.

• How to making minor adjustments (e.g., pulling upper or lower lip back)

• Routine – timing and use of adaptive equipment and apps

• Referrals to osteopathic manual therapy, craniosacral chiropractic/bodywork, dentists, SLP, and other resources

• Pain management for baby

• Wound care support (occupational therapists are qualified to provide wound care as it falls within their scope of practice!)

• Psycho-social support for frustration, stress, depression of parents

Early Warning Signs can include:

Mom:

• Painful/damaged nipples

• Frequent nipple infections or thrush

• A declining or poorly established milk supply

• Sore cracked nipples

• Thrush

• Mastitis

• Insufficient milk supply

Baby:

• Fusses at some point during the feeding

• Loses seal (“falls off”) on the breast or bottle frequently

• Is not gaining weight well

• Is very cranky/gassy/uncomfortable after feeds

• Reflux

• Spills a lot of milk from the mouth while eating

• Seems to cough a lot while breastfeeding or bottle feeding

• Takes a long time to complete a breast or bottle feed and never really seems satisfied

• Short feeds

• Non-stop feeds

• Unsettled baby

• Weight issues

• Difficulty sleeping, especially at night

• Baby may fuss or arch away from the breast when it is presented

• Tongue can look like it has a heart shaped tip when trying to extend

• Tongue can look square or flat

• Baby cannot poke tongue out beyond bottom gums or lip

• The tongue humps up in the middle instead of plunging forward

• Tongue cannot move freely to the left or right of mouth

• Baby often makes a clicking or smacking sound while trying to eat

We know how scary feeding difficulties can be for infants and babies. It can be very overwhelming to find out that your baby may have a tongue tie or functional issues. We see the value in having a team to support you on your feeding journey! Infants are amazingly adaptable and when you have the right support the challenges can be overcome.

Family Foundations Therapy CEO/Founder & Lead Occupational Therapist is experienced as an Oral Motor Therapist, Certified Breastfeeding Specialist (CBS) and skilled in Myofunctional techniques, Osteopathic Manual techniques/Craniosacral techniques, and infant/pediatric feeding. She has not only professional experience to address TOTs but also personal experience from a difficult breastfeeding journey with her daughter, which resulted in a diagnosis of TOTs. Unfortunately, it involved no therapy at the time, of which her daughter has now been diagnosed with obstructive sleep apnea, which is slowly being addressed through Janelle's skilled therapy!

You can read more about Myofunctional Therapy and OSA here: https://www.mdpi.com/1648-9144/57/4/323

Janelle began to specialize in TOTs and infant feeding because she experienced the lack of available supports in her community at the time, it has been her goal to help other mothers who are struggling so that they do not have to end up with more complicated issues due to difficulty finding support and lack of services and/or support.

Janelle also had her own myofunctional therapy journey to pursue a tongue tie release!!

Reach out to Janelle to inquire about her personal journey.

We can be part of your team and help solve the feeding concerns that you are having. Email us at support@familyfoundationstherapy.com to begin the discussion of how we can help you and your family.

***Occupational Therapy services are covered by most healthcare insurance plans****

Janelle Daku, Women’s Health and Pediatric Occupational Therapist

What our customers are saying about our Lead Occupational Therapist:

Customer Experiences:

"I reached out to Janelle for assistance with my 3 month old baby who was born with a posterior tongue tie. The tongue had been released but we were still experiencing some difficulties with low facial muscle tone and tightness in his body. Janelle gathered a thorough history of my concerns and observations and gave me a few options to have my baby assessed by her in person. I really appreciated the option of in home assessment especially due to the pandemic. Her in home assessment was also very thorough and I was incredibly impressed that the oral and feeding assessment was consistent with what I have seen recommended by those who specialize in tethered oral tissues. That alone gave me great confidence in her as it has previously been challenging to find adequate help with therapy post tongue tie release. She provided me a plan that was easy to follow and not overwhelming and I have already seen great improvement with consistency. Janelle was extremely supportive and relatable; I felt as though she was also there to support me in my goals for my baby. Her communication is excellent and she is extremely knowledgeable."

-Erica

Janelle and the oral motor therapy she provides has been such a blessing on breastfeeding journey and my wellbeing as a new mom. My son had a tongue tie clipped shortly after he was born but I continued to have an excruciating latch. On top of that, he started to fuss, squirm, and cry through every feed. I saw family doctors, an ENT specialist, lactation consultants, a pediatric dentist, started him on an antacid for reflux, and at one point had to be treated for mastitis. I kept being told that “he had good range” and didn’t need any further clipping, but I knew something was wrong. I would go home after the appointments, cry through all the feeds and feel my hope for breastfeeding slip away. Little did I (and most of the specialists I saw) know, was that even though “there was good range” when they lifted his tongue and lip he still didn’t know how to use the muscles in and around his mouth to suck effectively. I would count down how many more times I had to feed him in the day because, quite honestly, I hated it. Not only was it painful, but I could see how frustrated my baby was when eating, and it broke my heart. When my son was 4.5 months old Janelle met with us for the first time and we started oral motor therapy under her guidance and support. I noticed a difference within weeks, and now, at 8 months old breastfeeding is that beautiful, bonding, relaxing time I had always envisioned it would be. My only regret is not starting it right away. Feeding no longer results in tears, frustration, and pain. Just a relaxed mama and a satisfied happy baby.

-Andrea