Lip / Tongue Tie Revision Story

We are a family with tied lips. Clearly it’s a dominant gene because all four of my children were born with them. (If you’re reading this thinking what the heck is a lip tie?, just google image it. I considered including one in this post but honestly looking through pictures of tongue and lip ties makes me nauseous).

Lip and tongue ties are known to cause a multitude of breastfeeding problems, from painful nursing to decreased supply. Recurrent thrush, mastitis, plugged ducts, and even early weaning can all be symptoms of a tied lip or tongue (smarter people call this ankyloglossia). I’m not saying that everyone who has those problems has a baby with a a tie- I’m just saying that breastfeeding a baby with a tie can lead to those problems.

And, let’s be clear, when I say lip ties are known to cause breastfeeding problems, I mean proven. I do not mean that it’s common knowledge, because it’s not. I went through weeks and weeks of bloody, mangled nipples with my first daughter and no one thought to check her mouth for a lip tie. Even with my twins, I saw 4 different lactation consultants (even IBCLCs) and none of them told me my twins’ lip ties were a problem. Two did acknowledge that they had them, but they told me it wouldn’t be a problem because they were “stretchy”.

Based on my experience and limited research, I think it’s possible that a significant number of mothers who are unable to breastfeed because of pain, supply, or infant weight gain issues have babies with a tongue or lip tie – perhaps more often a lip tie, since tongue ties are more likely to be addressed. Even if some babies overcome the restriction of the tie and learn to nurse, a lot of the difficulty and frustration mothers experience in breastfeeding for the first few weeks or months may actually be avoidable. Hopefully over time pediatricians and lactation consultants will begin to recognize the improvements made to breastfeeding after a lip/tongue tie revision and early diagnoses will become more common.

The image below lists some of the signs of a lip or tongue tie. Following is my own tongue/lip tie experience with my twins. Scroll to the bottom of the blog for links to other information and resources about tongue and lip tie revision.

TLB-common-symptoms-of-TTLT-meme.jpg

My twins’ lip tie story:

Thankfully I have a friend who became quite the expert on the subject of ties after a very bad experience nursing her son (who was tongue and lip tied). Unfortunately this was only AFTER I had gone through the pain of nursing my first baby. Still, nipple pain turned out to only be temporary with her. At some point around the 5/6 week mark, my nipples finally scabbed over for the last time, healed, and I was able to nurse her until 8 months (when she weaned early – another symptom of a lip tie).

When my twins were born, I noticed immediately that Samuel had a severe tongue tie and both had lip ties. It was painful to nurse him from the beginning. By the time we left the hospital (30 hours after birth) my nipples were already bleeding. At the time it seemed like Sam was the only one causing the damage, so I decided to first address his tongue tie and see if things would improve without revising the lip ties. This is an easier road to take because a tongue tie can be clipped in a pediatrician’s office whereas a lip tie requires revising by a specialist or a pediatric dentist (more time, more money).

Things did improve significantly immediately following Sam’s frenotomy, but within a week the pain had gotten worse again. I also started to notice that Sam never really created a seal on my breast and actively sucked. It was more like he just opened his mouth, put it up to my nipple, and waited for the milk to flow out (which it did, thanks to tandem feeding and an overactive letdown). I had my first plugged duct when they were 1 week old, and it took a whole week for me to dislodge it. I had multiple plugged ducts after that, a few milk blisters (blebs), and then thrush.

I was well aware that all of those things are symptoms of a lip tie, but the sad truth is that money is pretty tight around here, and laser revision isn’t cheap. My experience with Vera told me that if I just kept at it, my nipples would eventually heal and the pain would go away. Also, I had multiple visits with lactation consultants and for some reason at the appointments I was able to latch them correctly and breastfeed with no pain, but then I would come home and not be able to replicate it. This made me think it was more an issue with my technique than their mouths. If I was showing any signs of a supply issue, I would have done it in a heartbeat, but I wasn’t, so I just decided to power through for a few weeks and see what happened.

Nothing happened.

For a few days things would seem better and then bam! another fissure would appear and I would be back to clenching my teeth and curling my toes. At 4.5 weeks I unlatched Sam after a painful nursing session and noticed he had literally taken a small chunk of my nipple with him and I thought that’s it. I’m taking them in to be revised.

I made an appointment with Dr. James Jesse in San Bernadino, Ca. He is not the closest dentist that performs revisions, but he is one of the best in the country, so I figured it was worth the drive. A year and a half earlier I had Abel’s tongue and lip ties revised by a pediatric dentist in San Diego – Dr. Chan – but it wasn’t a great experience so I decided to take the time to see the expert this time.

Dr. Jesse was great. He was able to answer every single one of my questions, explaining the relationship between lip/tongue ties and painful breastfeeding. After examining the babies, he told me they both only needed their lip ties revised – not their tongues. This was a relief, because it cut the cost in half for us.

Dr. Jesse does the revision right there in front of you, so I was able to watch the whole procedure. Eddie sat in the dental chair and held each baby’s arms down (which obviously they DID NOT love), the nurse holds the lip up, and Dr. Jesse numbs the area with a shot and then does the laser. The babies stopped crying as soon as Eddie released their arms, which tells me that there was little to no residual pain from the laser – or that the numbing was effective. Either way, it was not by any means a traumatic experience.

I did not nurse immediately after because the babies were still numb, so we went to get lunch and I tried nursing after that.

It was the same. Ugh. Same pain, same everything. Major disappointment.

In the next 24 hours, Samuel seemed to be in some amount of discomfort and Tylenol helped. Mercy didn’t seem any different so I didn’t give her anything. Within a couple of times nursing, I noticed some change in their latch. It still wasn’t painless, but it was different. This gave me hope!

Sam seemed to adapt to the new mechanics of his mouth faster than Mercy – maybe because he hadn’t learned how to suck with the lip tie as well as she had. About a week after the revision, Sam was nursing great but Mercy seemed a little confused, like she wasn’t sure how to create a proper suction. It went along like that for about 2 weeks after the revision until she re-learned how to nurse.

Within a week the pain was significantly better and within 2 weeks there was no pain. There were a couple of sporadic days in the coming weeks where I suddenly had pain for 2 or 3 nursing sessions in a row and I would think maybe the tongue tie was an issue after all, but I kept on and the pain would resolve quickly. I am still not sure what the problem was.

Now, at 13 weeks, I rarely have any pain breastfeeding. I am absolutely certain that revising the lip tie was what made the difference. I am still on the fence about whether the pain would have gone away eventually had I not done the revisions (like it did with Vera) but it was worth the money to me to resolve the issue at 5 weeks. Had I waited, I may still be having pain now! If I have any more children in the future, I will get their ties revised in their first week of life.

Do you think your baby might have a lip or tongue tie? DO NOT TRUST A DOCTOR OR LACTATION CONSULTANT IF THEY TELL YOU LIP TIES DO NOT CAUSE BREASTFEEDING PROBLEMS, OR IF THEY TELL YOU YOUR BABY’S LIP HAS GOOD MOBILITY IN SPITE OF THE TIE. If you are having any breastfeeding problems at all and your baby has a lip or a tongue tie, find a provider who is knowledgeable and look into getting it corrected.

Here are some links to information/resources on tongue/lip tie:

Dr. Ghaheri’s Blog (all of the posts are worth reading!)
A video of a lip tie being released with laser
Provider Search
Tongue Tie Support Groups on Facebook:

 

 

 

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2 thoughts on “Lip / Tongue Tie Revision Story

  1. I’m so glad you shared your story! Hopefully someone will find this as they are desperately seeking a solution to their breastfeeding nightmares and you will help 🙂 I certainly didn’t find much that was helpful the first 8 weeks of Ben’s life. Thankfully it seems like their is a lot more “awareness” out there now but it’s still pretty pathetic, especially among medical professionals!

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    • Yes! I hope so too. The bigger hope is that it will become commonplace enough that insurance will actually cover the full amount… it’s frustrating to me how something so necessary could be so expensive!

      Like

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