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Tongue Tie Mysteries Revealed

Being a new mom is tough! You are getting to know your baby while everyone around you weighs in on what to feed your child, how to care for your child, and how to get your child to sleep.  Now add to this experience the fact that you know something is wrong, but everyone around you insists that you just need to relax.

Meet Kristi, a friend from graduate school and fellow pediatric speech-language pathologist.  Kristi had, like me, received some basic training on tongue and lip ties, but nothing could compare to going through the experience first hand.

Jocelyn: Gush to me about your child. Tell me how things have been going as a new mom.

Kristi: I was born to be a mom. I love being a mom. I was waiting my entire life to have this new identify and child and it’s been amazing. I have been blessed to be home
with him since he was born and I never thought that would have ever been an option. I’m truly in love and every day that love literally grows more and more and I don’t even know how it’s possible!
He’s a complete Gemini like me and he feels very deeply as I do so he’s been a bit tougher than the “average” baby (actually, that’s an understatement) but he  has become easier (at least for me) as he is now more mobile. However, he really matched the profile of a tongue and lip tied infant in terms of temperament resulting from pain and discomfort. He really is my joy, though!
J: Did you breast feed or bottle feed?
K: We have breastfed since he was born. He latched like a champ when he was born and barely let go until he was 6-7 months old. When he was 5 & 6 weeks old he took 3-4 2oz bottles total over those two weeks but once feeding was no longer instinctual (after 6 weeks) and his gag reflex emerged, all abilities to use a bottle stopped as he just gagged on all bottle nipples continuously and would not suck unless on the breast. He also never accepted all 800 pacifiers I tried (but now that he’s 10 months of age, I am excited that he never did! He also never found his thumb).
J. When did you first realize there was a problem?
K: I first saw his tongue tie within moments after he was born or somewhere within the first 2 hours (it was such a blur!) but I knew when I saw him cry that he was tongue tied. My husband has a moderate-severe anterior tongue tie (short lingual frenulum adhered to the tip of his tongue) that was never revised. My husband’s two brothers were also tongue tied but revised as infants. As tongue ties are hereditary, I expected Neil to be tongue tied so I was looking as soon as I met that sweet face and saw him crying. Neil didn’t have the classic anterior tongue tie, like my husband, so I was a bit confused, as I was not as knowledgeable on tongue and lip ties until after I did my research once he was born, as to why he had a very slight v-shaped notch at the tip of his tongue and a dimpling of his tongue just beyond the tip. Later, I saw that his hard palate was a little higher and more narrow than I believed to be typical (but still not even moderate or severely high and narrow). I also didn’t realize initially that when he cried, his tongue tip did not contact his alveolar ridge. Instead, there was a cupping of the tongue as the sides of his tongue cupped up while crying but did not elevate higher than the corners of his mouth. He also was a MARATHON nurser. This took awhile to realize as breastfeed babies frequently feed every 45 min-2 hours (that means if they feed every 45 minutes that it is 45 minutes from the BEGINNING of the first feed) so I knew that frequent breastfeeding was typical, but Neil LIVED on my breasts. The next points are HUGE…
  • DID NOT have ANY pain breastfeeding…EVER!!! (except for 2-3 days of thrush when he was 5 weeks old, also related to his tongue tie but not relevant at the moment) and
  • he DID NOT have ANY difficulty latching!! He only had occasional reflux.
  • He also gained TONS of weight (after losing 7% of his body weight within the first week of his life-up to 10% is normal in breastfed babies-weighing just 1oz more than his birthweight by 10 days old).

Basically, Neil did not LOOK or fit the profile of an infant that had a tongue tie to ANYONE (more on that in the next question). Actually, the IBCLC in the university hospital we ended up having to deliver at due to preeclampsia at 40 week & 6 days told me that I seemed as though I was breastfeeding my 4th child (not my first like he is) based on how well everything looked!

I noticed that Neil’s latch became a bit more shallow than it had been in the hospital and the first weeks at home, but still nothing alarming to me. At 3-4 weeks, I noticed that he often choked upon my letdown which resulted in sputtering the breastmilk and coughing before latching again eagerly and seeming to manage the flow. I heard clicking while he nursed intermittently. He also had a nursing blister on his top lip and an appearance of “chapped lips” occasionally. NURSING BLISTERS ARE NOT NORMAL! Most people including pediatricians tell you that they are normal. They are COMMON (and so are tongue ties), but NOT normal. The biggest indicator of something being wrong was the incessant crying Neil did and the borderline diagnosis of “colic” he was provided. He wasn’t a true “colic” infant as he was easily soothed on the breast (whether that be that sucking was organizing for him, that he needed more time to adequately transfer milk, cluster feeds, or that the reflux he was experiencing was being soothed by the breastmilk which is like an antacid-even though he didn’t have a TON of reflux-I’m not sure which or all of the above). I don’t believe in “colic” and I believe that “colic” is often related to tongue ties and resulting aerophagia that looks like “just” reflux which infants are then overly medicated for. I also think that everything in their entire body becomes much tighter, especially within the head and neck, due to the tethers and that can create it’s own discomfort. It also took me the LONGEST time to realize that the “breastmilk” I heard hitting his tummy while actually AIR!
J: Who did you contact? What did they say?
At the hospital, I spoke to every doctor or intern that I encountered including my midwives, his pediatricians, and even the IBCLC. All told me that he was fine and there wasn’t anything.
I told my breastfeeding friendly pediatrician twice within Neil’s first 2 months that I believed he had a tongue tie and I was told that “notches in the tongue just existed for some people.”
No one seemed to care that I was a SLP or that by 2 months I had done SIGNIFICANT research on the topic. They asked me if I had pain breastfeeding…”no” then looked at his chart to see he was gaining weight VERY well (he was born “off the charts” in weight and length) but he continued to stay that way. I’m not sure if it was true for Neil because he continues to be “off the charts” but MANY breastfed babies with tongue and lip ties gain A LOT of weight because they are just consuming all of the letdown. Hormones play less of a role after 3-4 months when the breastmilk production regulates to meet the needs of the baby determined by how well the baby drains the breast at each feeding. It was also suggested that I have an overactive letdown or forceful letdown. . Babies without tongue and lip ties manage their mothers letdowns without difficulty (choking on the breastmilk at the letdown).
My pediatrician does not know about either revision that Neil had.

J: How did Neil respond to treatment? What changes did you see?

K:My husband swears within the first 3 days he saw a completely different child (it took a little longer for me to see it) but he actually began not just falling asleep at the breast when he was done feeding, but staying awake and popping off! That happened the same day as the revision took place. I was in SHOCK! I heard that babies would do that but Neil had never done that. It was amazing. He became a much happier child.

J: Were you ever told that there wasn’t a problem? How did that make you feel?

K: Yes, but that just energized me to PROVE to myself that I was right. I was right that the tongue and possibly lip tie were causing severe gastric distress resulting in “colic” and needing to breastfeed frequently. He had a moderate-severe posterior/submucousal tongue tie and a moderate lip tie. I am fortunate the hospital did not determine the tie because they would have tried to use scissors only and not have done a complete revision. The tongue and lip tie resulted in Neil having a weak latch and difficulty moving his tongue for adequate and safe milk transfer. He was taking in way too much air at each feeding. At 2.5 months of age I met other mothers who had similar stories. They put me in touch with Dr. Scott Siegel, one of the two preferred providers for oral tethered issues in New York. I was given all of the validation I needed. We had his first revision when he was nearly 3 months old. This was important to me because if he was not adequately transferring the milk out of my breasts that my milk supply could seriously decrease after 3-4 months when Neil became relevant in regulating my breastmilk production and supply.

J: What made you pursue the second surgery?

Baby Neil trying solids

I noticed at 6 months when he began solids that his tongue was not elevating to accept food he was placing in his mouth. As a SLP, I knew it did not look right. I was concerned that their had been reattachment in the healing process even though at our follow up Dr. Siegel said there was not reattachment. We found out he had what they call a tie that was not visible, and  was not evident until after the release of the posterior/submucousal tie. The second revision occurred while Neil was held in my husband’s lap (again he nursed within 5 minutes of the procedure.) This revision was AMAZING to see just how much more Neil’s tongue could move and ELEVATE. I was so happy!

J: Can you describe the tongue tie revision procedure? I know a lot of parents worry about this!

K: The revision itself was simple and quick (less than 2 minutes). He was awake and in his infant bucket seat. A laser was utilized and he wore goggles. He was provided with a topical numbing agent. I know many babies are swaddled if out of their infant bucket seat. Discomfort (or pain) was more from having hands in his mouth for the procedure. I know adults who have had the procedure done and said they did not even feel the laser but had soreness within 6-24 hours after the procedure for a few hours maximum. He breastfed within 15 minutes after calming down (that’s the longest I’ve heard of a baby taking to breastfeed after, most are even sooner than him) in the office. 
J: What is your advice for parents who suspect a tongue or lip tie?
K: My advice is never to listen to a pediatrician about tongue and lip ties (or breastfeeding) as most are not educated enough in this (these) area(s) (or many areas beyond general health and wellness). The general recommendation by a pediatrician will be (if they even suspect or identify tongue and lip ties) to do nothing unless it’s the classic anterior tie with tip restriction incredibly obvious. It is crucial to meet with an internationally board certified lactation consultant (IBCLC) and possibly even more than one IBCLC to find one who is super knowledgeable in tongue and lip ties (not all are). I also believe it is IMPERATIVE to find a preferred provider (specialist) for tongue and lip ties in your state (New York has only two) who will correctly identify and release the tethers via laser instead of scissors which often do not fully release a tie. ENT doctors are also not necessary to see UNLESS they are a preferred provider for tongue ties, as well or are recommended by a preferred provider who believes their education in tethered oral issues is superb.
We hope that by getting the word out there, more parents can identify tongue and lip ties and get the appropriate care for their child.
For more information on tongue and lip tie, contact me or find providers here.

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