Exposing The Beast: Lip and Tongue-Tie in Our Children

photo(24)By Krystle K

I would like to shed some light on “the beast” that is known as undiagnosed
lip and tongue-ties. I call it “the beast” because it is a force to be
reckoned with on many levels.

Not just unknown amongst the general public, but even many healthcare
professionals are unaware of what lip and tongue-ties are and their
possible implications.

I know these implications first-hand and have documented our journey
through the muddy waters of lip and tongue-ties.

photo(7)

Lip and tongue-ties are midline defects. This defect is present if one or
both of the frenulums, the connective tissue that is located under the
tongue and in the underside of the upper lip, are extremely “tight” and
restrictive. This can cause many problems such as latch and speech issues,photo(14)
difficulty swallowing and digesting foods, tooth decay, TMJ, headaches and
much more.

I used to think the term “tongue-tied” was just a saying, but I have since
learned IT IS A VERY REAL THING! For us, it all started one morning while
perusing Facebook. I saw an article on lip and tongue-ties, and out of
curiousity I checked it out. I can honestly say Facebook changed my life
that day. Once I read about the correlation between lip and tongue-ties to
breastfeeding issues, I had a sneaking suspicion… I lifted my 4-month-old
daughter’s upper lip and gasped – A LIP TIE! I immediately lifted her
tongue – A TONGUE TIE! Off I ran to grab my 18-month-old; also lip and
tongue-tied!

I cannot explain to you how relieved I was. After experiencing every kind
of road block with breastfeeding – cracked, chaffed and bleeding nipples,
thrush, mastitis, clogged ducts, low supply and babies with reflux, colic
and latch problems – I FINALLY had an answer. My eldest daughter weaned at
6 months and it absolutely gutted me. The timing of my diagnosis was
perfection; my second daughter was having all of the same issues I
mentioned above. She was beginning to fight at the breast, crying while
trying to latch and having all sorts of troubles with gas and reflux.
“Breastfeeding shouldn’t be THIS hard” I would sob as we battled yet
another awful round of thrush or mastitis. I was at my wit’s end calling La
Leche Leauge, searching online groups, and eliminating as much as I could
from my diet. I was reaching out for any and all help I could find to try
and get on the right track to enjoying the blissful breastfeeding
relationship I had envisioned. So I’m sure you can understand why I was
doing my “lip and tongue-tie dance” around my kitchen. An answer, finally
an answer!

photo(16)As I continued to research, I found that their lip and tongue-ties affected
both of their abilities to latch, causing them to take in air, which led to
gas and reflux, which led to “colic.” And on and on it goes… Because of
their inability to latch properly, they were not emptying the breast which
manifested into multiple rounds of clogged ducts, mastitis, and thrush. SO
not fun.

As relieved as I was, I was also slightly annoyed that I could recognize
this so easily once I’d seen an example, yet my pediatrician had even
looked in my children’s mouths multiple times and missed it. How could he
miss this? I was told reflux was normal and my babies were lazy nursers.
What surprised me most was the resistance I encountered when trying to get
professionals to acknowledge or agree with this diagnosis. I was told by
pediatricians, ENTs and dentists that lip and tongue ties did not affect
breastfeeding. They were not only dismissive but would laugh as if I were
talking about mythical creatures.

This is where my mission became clear. I was going to have to do my own
research, decide what was best for my family and make an informed decision
without the support of the professionals. I got plugged into a great
support group and knew a revision (otherwise known as a frenectony) was the
right move for both of my children.

3 things are key to having a successful frenectomy:photo(25)
1. Choosing the right provider who is experienced with revisions and
understands this
diagnosis
2. Using a laser and not having it clipped with surgical scissors
3. Performing aftercare “body work” to help relieve the tension and keep
the frenulum from
reattaching. This includes stretching the site and getting
chiropractic or craniosacral
therapy.

I experienced AMAZING results following my daughters’ revisions: we never
dealt with thrush, mastitis, reflux or any of our issues from that day
forth. Additionally, both girls’ two front teeth (which had considerable
gaps) drifted back together, speech was improved and BEST of all — my
(now 2-year-old daughter) began breastfeeding again for the first time
since she weaned at 6 months of age! IM NOT KIDDING! A few days after the
revision she asked if she could “have boobie too?” and I almost fell off my
chair. I have often asked her over the last year if she would like to nurse
again and she always told me “no.” To my surprise she latched on perfectly
and has been tandem nursing with her younger sister since. I asked what she
thought about having the ”boobie” again and she replied: “it makes me
happy.”
Pretty awesome ending if I do say so myself.

Watch Our Revision Footage

Aftercare and Healing Products to Use

13 comments

  1. I have a 14 month old who I suspects has lip tie (mouth looks very similar to before pictutes). It sometimes hurts when she breastfeeds (I had recurring white spot for months) but is generally ok now. We had her tongue tie cut at 2 weeks. Is it worth having a revision at this age? Her teeth have a gap. She is learning to talk and mispronounces consonant clusters (br bl sp) but that could just be her developmental stage.

  2. This is total nonsense!! My little girl has the skin down to her teeth like the first pics and I have successfully breast fed her from day one, I have never had any mastitis, thrush or anything else! Oh and btw, I am still feeding her and she is 4 years old past in November so I think that can pass as a successful feeding lol

    • You are very lucky not to have experienced any difficulty from your child’s ties, but that doesn’t make scientific research nonsense. see Dr. Kotlow http://www.kiddsteeth.com/articles.html

      My story is exactly the same as Krystle, pain, an open wound for me, multiple bouts of “thrush”, being told I had a “lazy nurser” with a hard suck and a high palate, never truly feeling empty after a nursing, slow weight gain for my lil guy, GREAT difficulty brushing his teeth, gas, lllooooonnnggg nursing sessions even at 16mos, continued night feedings where i KNEW he was hungry, dismissal by professionals, etc…

      I’m happy your child doesn’t have issues, but for a lot of us discovering ties is a truly life changing “A HA” moment, and being taken seriously is a HUGE deal for validation as a mother who KNEW something was wrong.

      • Sarah. I was told son of the same things. Like my daughter was a grazer or lazy nurser and that she just had a hard suck. I had bleeding nipples and they were cracked so bad. I noticed her lip tie and the doctors want to wait till she’s older to do anything. Luckily she has grown adapt to it an is still successfully breastfeeding at 17 months. But I’m glad that I now know that all that time there was a reason for the things I was told was normal.

    • Please try to be sensitive to moms who have tried everything to breastfeed their lip tied babies. Occasionally it is possible, but most are forced to switch to formula after a lot of struggling. I’m happy for you, but you are the exception and a single situation is just anecdotal. Actual research has been done.

  3. I think my son had a slight lip tie, then he fell & injured it. So it kind of fixed it’s self.

  4. Pamela, to say, “This is nonsense” is absolute NONSENSE. Some babies can adapt with a tongue or lip tie better than others. Also, you describe your daughter as having a lip tie. Having both a lip tie and a tongue tie together is a WHOLE DIFFERENT world. Shame on you for your dismissive, disrespectful, and uninformed comment!

    My daughter had a severe lip tie, but no tongue tie. It was diagnosed by a IBCLC and I didnt even think it was causing a problem. I got it fixed, though, because it is easier to fix when they are young and I was worried about tooth decay and speech issues. I was completely surprised at how much more comfortable nursing became after the revision! Still going strong at 20 months.

    It is terribbly shameful how this mom, with all these problems, had to discover this on her own after struggling for so long. Our medical system depresses me. Where I am, I have great access to alternative care, but so many people in the U.S. just don’t have that.

  5. parents need to realize that there are other things you can do. my son has a tounge tie that goes all the way to the tip of his tounge. we nursed to 18 months with no problems. only reason we stopped was because of sensitivity because I was pregnant. you don’t have to do anything drastic. it’s a choice.

    • Quinncy, I’d like to know what less-drastic things you can do besides CST or chiropractic adjustments. You’re right that it IS a choice, but to sustain a breastfeeding relationship, sometimes it’s necessary. My daughter had a very tight posterior tongue tie that was overlooked for the longest, longest time. It absolutely was the root cause of our breastfeeding issues (all the same as the author’s), and the less-invasive remedies we tried pre-revision were all unsuccessful… and our breastfeeding relationship was on the brink of ending. The revision (we clipped, didn’t laser) was actually very simple and non traumatic, she recovered with ease, and we’ve been nursing wonderfully, pain-free, and with optimal transfer ever sense. She’s now 16 months. So if your child has a TT, feel free to try ‘other’ remedies, but don’t feel like you’re making a “drastic” choice to clip or laser the tie. The worse part about ties that cause nursing difficulties is that so many medical professionals dismiss them as non problematic. Such a shame. Mama and baby know best.

      • Several conditions can make it easier to nurse without pain when a TT or LT are present: a mother with soft and compressible
        areolas, overactive milk ejection, using compression techniques while nursing, or a baby with a wide lip opening, or a combination of these factors. Not every pair can accomplish pain -free, distortion-free nursing with a full milk supply and thriving baby. Very few, in fact, when the combination exists.

  6. Al the way from Australia. Our little man born july 2012 was born with an extremely rare brain disease that causes involuntary muscle contractions he was also extremely low tone or hypotonic until10 months. I bf my eldest who was tt and also a sub mucosal cleft till he self weaned just after he turned 2… no issues what so ever. But with number 2 it was a WHOLE NUTHER BALL GAME. BF was always painful and sucky but for a year I put it down to his fluctuating tone and his condition. It wasnt until he was 1 I found out he had an extremely severe lip tie and also a terribly thick and tight tongue tie too. I had no idea a lip tie could even happen. He was failure to thrive by 12 months refused solids only bf. Despite me having over 300mls per side per double expressing session… so supply wasnt the problem he began being fed via a nasogastric tube due to not being strong enough to actually suck anymore
    we met with dr tim johnson in perth western australia who was trained by dr kotlow(the worlds best) this is DEFINITELY not nonsense

  7. THANK YOU THANK YOU THANK YOU!!!!! After reading this I lifted my littles lip and thought maybe. Then I went to my lactation consultant had her check my 9 mo and voila there was a lip tie! She has never been a great eater and everyone told me it was because she was so laid back but I knew she was hungry. She has cluster fed at night since hitting a growth spurt about 6 mouths ago. Now we are 3 days after surgery and no more cluster feeding! She eats better and sleeps better! This was such good info thanks again!

  8. We found out my daughter had a lip tie at 4 wks old, after we hired a lactation consultant to come to our house. The hospital I delivered at had no lactation team, unfortunately.. We had it revised a few days later; That was 9 days ago. We are still have pretty significant pain with breastfeeding. We saw the LC again yesterday and she has recommended cranio-sacral therapy to help with the tightness in my daughters jaws.

    I’m feeling so frustrated by this whole thing, and wondering why Dr’s aren’t trained more extensively in breastfeeding and why they don’t do more thorough exams in the areas that can cause breast feeding issues.

    I hope for pain free breast feeding, but my dreams of that are fading fast.

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