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.

Advertisements

9 thoughts on “Our Journey with Lip and Tongue Tie

  1. i understand part of what you went thru one of my daughters was tongue tied when she was born. She was a bottle baby.
    we found out when she was about 6 months old but couldn’t have the surgery til she was at least a year old, because it involved putting her to sleep and cauterizing one side and sewing the other. We took her to a pediatrician in Topeka ks. it didn’t affect her feeding but she couldn’t talk at all till she had the surgery when she was 14 months old. after the surgery she started talking and hasn’t shut up since lol . she will soon be 28 years old.

  2. Pingback: Car Activities for a Young Toddler | Cherishing Childhood

  3. Bless your heart! My son was diagnosed with the posterior tongue tie right at birth. It was so bad when he cried his poor tongue curled In and muffled his cries. Of course nursing was miserable. I pumped & bottle fed exclusively for 5 weeks while I “shopped” for a doctor who would preform a frenulectomy on such a young baby. I cried during the procedure. 2 days later we started nursing again & it was fabulous! I’m so thankful I didn’t give up. Thank you for sharing, no one around me has ever heard of this.

  4. Hello, I found this blog post by googling (googleing?) Dr. Stacey Cole lip tie revision. I am pretty sure my 9 month old son has an upper lip tie. I am trying to get a consultation with Dr. Cole soon. Thank you for being so honest about your experience! I am very nervous about putting my baby through that painful procedure unless it is absolutely necessary. You kind of addressed all of my fears in your post! My son is usually very happy, never thrown up, never taken medication, etc. His top two teeth are coming in though and I can tell that there is going to be a significant gap. (Though a gap isn’t reason enough for us to do the surgery. We are concerned with weight gain, eating solids, gas, dental health, etc.) How is your daughter now? Did nursing improve? Did you have reattachment issues? Is she emotionally traumatized? (Sort of joking, but not really! It sounds horrible!) Do you still think it was worth it?

    Olivia Nelson

    • Olivia, I just saw this! I am sorry that you are going through the same thing, but glad my post helped you.

      My daughter will be two next month and she is doing great. Her weight gain is still good, the gap between her two front teeth seems to be getting smaller, and she is quite a little chatter box 😉

      As far as being emotionally traumatized…she didn’t want anything to do with us putting our hands in her mouth for several months (the stretches were rough on her). There was really no reason for us to ever put our fingers in her mouth anyway though, except to check for new teeth coming in and even that wasn’t a pressing issue. I could usually tell by her behavior if she was teething, so we just completely avoided putting our hands in her mouth for any reason. Now that several more months have passed, she is completely fine with it. She will let me look in her mouth with no problem at all.

      I don’t believe she has any reattachment of the upper lip. It looks perfect. There may be a small amount of reattachment of her tongue tie, but it is difficult to say for sure. Even if there is, it doesn’t seem to be impacting function at this point.

      Please let me know if you have other questions! I hope everything goes well if you decide to have the procedure done.

      -Nanci 🙂

  5. Thank you so much for your post! My daughter has a hidden PTT and an ULT. The decision to treat is an emotional roller coaster. I had an ENT tell me yesterday she wouldn’t treat her children if they had my childs condition, and it dishelved me and left me unsure of my once quite convicted decision to treat. I decided today after mulling over yesterdays events that I do want my daughters ties revised. I have an appointment with another ENT close to me,next week, but she doesn’t use laser. I emailed Dr. Kotlow, who kindly responded, but isn’t able to get a list of doctors to me right now. You said a group you are a part of has a list??? Do you mind sharing the group and the list, please? Thank you so much for your post. It was very helpful to me.

  6. Here is a child with teeth on the picture. And you are talking about nursing baby?
    Get things straight please.
    And who gives versed to the babies?
    Just my physician’s opinion:)

    • As I mentioned in the post, the American Academy of Pediatrics and the World Health Organization both recommend nursing children to AT LEAST the age of two and recognize the continued benefits of nursing past the age of two. My daughter was 15 months old in those pictures. She is now two and a half years old and continues to nurse.

      If you think breastfeeding should cease when a child’s teeth erupt, you are very misinformed about breastfeeding.

      Also covered in my post was the information of who gave her the versed — Dr. Stacy Cole in Fort Worth, TX — an experienced and respected expert in the field of child frenectomy, whose opinion and practice I trust.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s