Our Journey with Lip and Tongue Tie

Several months ago, we discovered that Stella had an upper lip tie and posterior tongue tie.  I won’t go into detail about them here, since a quick internet search will give you plenty of information.  Instead, I want to talk about what the warning signs were, because as far as breastfeeding is concerned, the earlier you can identify and revise a tie, the better.

If I hadn’t been so determined to breastfeed, I would have given up.  I’m sharing our story because I’m passionate about the benefits of breastfeeding.  I understand that some women don’t have a choice because their bodies will not allow them to breastfeed.  I also understand that some women make the  informed choice to not breastfeed.  But, I also believe that many women who do want to breastfeed are  robbed of having a real choice in the matter because of undiagnosed, unrecognized issues such as these — issues that have a solution, but need to be recognized by healthcare professionals.

Here’s how it went for us.

My first clue should have been that nursing was extremely painful for the first few months.  My complaints of pain were often met with a sympathetic, yet dismissive, “Yeah, it can be a little painful in the beginning while you’re getting used to it.”  But it was more than “a little painful.”  It was excruciating.  And it wasn’t just while I was getting used to it.  It lasted well past the three month mark.  I even remember crying sometimes when it was time nurse her because I was so sore and trying to get her to latch correctly was exhausting, painful, and frustrating for both of us.

The reason it was painful was because Stella had a “shallow” latch (a common symptom of lip and tongue ties).  She rarely opened her mouth wide enough and always curled her upper lip under.

I tried using shields, which did help with the pain, but was met with disapproval from my lactation consultants.  I started to feel guilty about using the shields and was concerned they could negatively impact my supply, so I worked to “wean” her off of them.

Despite the incorrect latch, Stella gained weight normally.  After a few months, the painful nursing subsided (or so I thought) and we had what I thought was a normal nursing relationship for the remainder of her first year.  As it turns out, she never had a correct latch.  The relief I felt was due partly to the fact that she learned to compensate for the ties by changing the way she sucked so she could actually get milk somewhat efficiently (which is actually pretty amazing, if you think about it — infants are so cool 🙂 ) and partly due to me just getting used to the painful nursing.

For various reasons (including the WHO’s recommendation), nursing until at least the age of two is important to me, so I continued nursing after Stella turned one.  When she was around 13 or so months, breastfeeding became very painful again.  This time, I started searching for answers.

Through countless Google searches, reading several research articles, and posting a dozen questions on the Tongue Tie Baby Support Group on Facebook, I came to the conclusion that Stella did, in fact, have a lip tie.  I emailed photos to Stacy Cole, DDS, in Fort Worth, Texas, who is one of the leading practitioners in the field of infant/child laser frenectomy.  He confirmed my suspicions and informed me that when a lip tie is present, there is almost always (more than 90% of the time) a posterior tongue tie present, as well.  Sure enough, Stella had both.  Her lip tie was Type IV, the most severe.  The reason the nursing pain and bad latch returned after several months of less painful nursing is because babies’ sucking patterns change from infancy to toddlerhood.  Since her sucking pattern was changing, she was having to learn how to compensate for the ties all over again.

Based on the many issues that lip and tongue ties can cause — breastfeeding, speech, swallowing, digestion, jaw misalignment, tooth decay, tooth gap (which Stella has), weight gain — there was no question for us as to whether or not we were going to get the surgery for her.  We scheduled our appointment for a few weeks later and we made the 8 hour drive to Texas. We took a lot of fun activities to keep her happy in the car!

I know many people think we’re crazy for traveling so far for the procedure.  We chose Dr. Cole because he comes highly recommended and has much experience doing laser revisions on infants and toddlers.  Through my research and stories from other moms in the support group, we knew it was important to have someone very experienced perform the procedure to insure it was done correctly and to reduce the risk of reattachment.  There’s no way we were putting her through all of this only to have it reattach a couple of months later and have to do it all over again.  Aside from Dr. Amy Grawey in Missouri (who was on maternity leave at the time), Dr. Cole was the closest provider we felt comfortable with.  The support group I joined has a list of “preferred providers” based on experience, reattachment, effectiveness, etc., which is how we found him.  It’s pretty tough to get on the list, so I knew he would be good.

When we arrived at the clinic and Dr. Cole examined Stella’s mouth, he couldn’t believe I had nursed for so long with how restricted her mouth was and how it would feel to nurse a baby like that.  What relief!  This painful nursing wasn’t all in my head!  Finally, someone validated my feelings!

I’m not going to sugar-coat it – I thought the procedure was nothing less than horrifying.  Stella was given Oral Versed to make her sleepy and sort of “out of it” and then a local anesthesia was injected near the surgical sites.  (By the way, be emotionally prepared if you ever have to see your baby “drugged up” — that was not a good feeling.)  She was awake for the entire procedure, just groggy.  She was swaddled in a blanket and then her body was strapped to a board thing.  Jacob was responsible for holding her head still.  I bent down so she could see me and so I could speak quietly in her ear.  I reminded her what was going to happen (we had talked about it a lot beforehand) and then I started to sing to her.  They put glasses on her eyes to protect them from the laser beam, propped her mouth open with a mouth guard, and Dr. Cole began cauterizing the tissue, first her lip and then her tongue.  She screamed and cried hysterically for the entire procedure, and while it took less than ten minutes, it was the longest ten minutes of my life.  They say that babies aren’t really in much pain during the procedure and that they are mostly upset about people messing around in their mouth, but that was definitely not the case for Stella.  I know my baby’s cries and those were most certainly cries of pain.  I am ashamed to admit this, but I had to leave the room near the end of the procedure and go to the bathroom because I was going to either pass out or be sick from the anxiety of seeing her so upset and in pain.  I’m getting sick to my stomach and teary-eyed writing this even now, and it’s been over two months.  Dr. Cole and his staff were amazing though.  I would travel there again in a heartbeat.

Before and After

Before the procedure and two months post-revision. I don’t have a good picture of the tongue pre-revision.

After the procedure was over, I immediately picked her up and she began to somewhat calm down.  She was still groggy from the Versed, and that was really nervous-making for me.  I kept asking if it was normal and they kept assuring me that it was.  We were taken to a small room with a rocking chair where I tried to nurse, but she just ended up getting frustrated and more upset because her mouth was still numb and she couldn’t latch.  She threw up a couple of times, probably from a combo of the Versed and the stress.  That upset me, too, because she had never thrown up before.  She finally calmed down and we went back to our hotel, where she threw up several more times, but was finally able to nurse, eat a couple of crackers, drink some water successfully, and keep it all down.  And the nursing?  WOW.  The first time she latched post-revision, I actually cried because I had no idea it was supposed to be so painless.

We had a lot of people praying for Stella through the procedure and that we would be strong and calm for her.  Oh, how I felt the power of those prayers.  Jacob and I were unusually calm through the entire process, except for the few minutes I had to leave the room during the procedure.  Stella did great through everything, given the circumstances.

The aftercare of the procedure involved stretching the sites twice daily and applying aloe for two weeks until they healed, to avoid reattachment.  Those definitely weren’t fun either, but we got through them by talking her through the process and empathizing.

Tongue and lip 5 days post-revision.  The gray color is normal and heals completely after 2-3 weeks.

Tongue and lip 5 days post-revision. The gray color is normal and heals completely after 2-3 weeks. You can really see here that her frenulum attached between her two front teeth.

Full disclosure:  Nursing didn’t stay wonderful.  After a couple of weeks, she began to revert to the compensated way of sucking that she was so used to.  This is common as babies begin to heal from the surgery.  We started cranio-sacral therapy for her (usually recommended with this procedure) with a chiropractor who specializes in it and began seeing some improvement.  We are still working for that awesome latch, but I have a feeling that her latch may never be perfect because of how she learned to compensate for so long.

So, with the stress, travel, horrifying procedure, upsetting after care, and still-not-great latch, do we regret having it done?  No.  She began nursing better and eating more, didn’t choke every time she took a drink of water, produced new sounds (starting the SAME DAY she had the procedure done), gained weight, and though she had always been a happy baby, she began smiling and laughing more frequently.  She had always been within a normal weight range, but gained only one pound from the time she was 10 months old to the time she was 15 months.  We had the procedure done and she gained one pound in four days.  We noticed many improvements and, all in all, I’m glad we had her ties revised.

Tongue and lip two months post-revision, completely healed.

Tongue and lip two months post-revision, completely healed.

I was certainly happy about all of the improvements we saw, but it also made me feel regretful and depressed that we (and various healthcare professionals) failed to recognize this problem.  Thinking of all the issues we could have avoided by having it revised in her first month of life is sickening. It’s been several months now since I discovered the ties and I’ve had some time to cool down, but I stand by my opinion that, when I presented with nearly all of the nursing symptoms related to a lip/tongue tied baby, Stella should have been checked immediately.  La Leche League advises, “Nipple soreness that increases or lasts beyond the first week should be interpreted as a warning that something is wrong.”

I found through my research that dentists, pediatricians, family doctors, and even lactation consultants are often misinformed or under-informed about ties.  I’m in the process of writing an informational letter to the lactation department at the hospital where I delivered to encourage their staff to check for lip and tongue ties on babies (they are pretty common), especially when nursing moms present with the symptoms related to it.  I’m hoping that this information can help someone who may be in the same situation I was.  Since we’ve had a lip/tongue tied baby, chances are higher that our future babies will have the problem.  I’m glad that I will now know to check them immediately and we will have the issue revised as soon as possible after birth.

Dr. Lawrence Kotlow is the leading expert in the field of child frenectomy and his website has good information, if you need it.  Also, if you think your child has a lip or tongue tie, you can send him your pictures via email and he will give you his opinion free of charge.  Dr. Cole (the dentist we went to) will do the same thing.

For information about correct vs. incorrect latching and sucking, click here.