The Research Continues

Because there is limited and mixed research on oral ties through Google, I began to think it would be more helpful to see if there was a support group on social media where I could learn from families personal stories on oral ties. I discovered a support group on Facebook specifically geared towards tongue ties. The support group had over 100,000 members, so I felt confident that I could get some good information from joining. After reading many individual's personalized journeys, I built up the courage to share our own.

The amount of support I received through comments and direct messages was so incredibly overwhelming. I quickly started learning about the severity of these oral ties and the impact they can have on the overall all health of babies.

One specific member, who messaged me directly, truly changed our lives forever. She was simply a mom who was on a mission to help other moms going through the same experience that she had with her daughter. After telling me about her story and how similar it was to ours, she brought it to my attention that there were multiple red flags associated with Emmett's posture in a picture that I had posted along with our story.

1. She pointed out that in the photo above, Emmett has one arm bent and the other arm straight. She explained that when newborns are on their back, they should rest symmetrically. The fact that his arms were doing opposing things in the photo shows that not only is his body experiencing tension, but it's experiencing an uneven amount of tension on one side versus the other.

2. Next she pointed out that he is tucking in his bottom lip and he has a recessed chin. She said that this shows that there is a heavy pull happening in the bottom portion of his face, likely due to a posterior rear tongue tie.

3. In the crying photo of Emmett in my last blog post, where you can visibly see his tongue tie, she pointed out that there is asymmetry in his face, again, suggesting that his body has more severe tension on one side versus the other.

4. Her last observation validated everything for me. She mentioned in the photo above that Emmett's head tilts to one side and slightly upward, which suggets that his body is under so much tension that he has what perceived as great head control at a very early age.

I failed to mention in my earlier posts that literally the day after Emmett was born, he was resting on my chest and he lifted his head so high that he was looking at me straight in the eyes. Brett and I were shocked at how strong he was so early on, but what we didn't realize is that this was an early sign of Emmett struggling.

After reading her fourth observation, I shared this information with her and told her that the unanswered questions over the last several weeks all made sense now! I was now 100% sure that oral ties were the cause of Emmett's suffering and there was no hesitation that he needed to go through with the frenectomy procedure as it would be a life saving procedure for him.

As this member continued to educate me through sharing her story, she suggested that we do not go through with the procedure as we had scheduled on Monday. At first I questioned her as I felt the urgency to get relief for Emmett as soon as possible because time was of the essence. She quickly explained that her daughter ended up having to get two separate frenectomy procedures because they did not go through enough therapy to release her daughter's built up tension BEFORE the first procedure. She explained that because Emmett's body is under so much tension, some of the oral ties might be so tight that they can be mistaken for hard tissue, so when the provider goes to cut the tie it would be an incomplete release. This was exactly what had happened to her daughter. She said her daughter's symptoms got better after her first procedure, but as the tension had enough time to build up again, they were back to square one. The reasoning behind the need for therapy all made so much sense to me, so I immediately turned to Brett to share this with him and told him that we have to make sure we do this right because there's no way in hell we were going to put Emmett through this a second time.

My next question for her was what kind of therapy does he need prior to the procedure? She told me that we needed to find a tie certified and savvy International Board Certified Lactation Consultant (IBCLC) and bodywork specialist in my area. She suggested that we needed to seek therapy with these specialists immediately due to the severity of Emmett's symptoms and overall condition. Already feeling like I couldn't handle a baby who was constantly screaming at home, I felt overwhelmed with the task of trying to locate these hard to come by specialists. I decided my best bet was to make a second post in the support group in hopes that someone in my local area would see it and be able recommend tie saavy specialists. This is when another member commented sharing an IBCLC's contact information, hoping she would be able to help us throughout the remainder of our journey. Within seconds, I was dialing the IBCLC's phone number and thank goodness she answered.

Right off the bat, she was so compassionate and assured me that we were in good hands. She spoke about the amazing and talented team of therapists she works with and how they are especially great in working with children diagnosed with oral ties. She told me that we weren't alone in this process and that their team would be there to support us and help get Emmett back to health.

For the first time, I finally felt like a healthcare professional was listening to our concerns and understanding the urgency of the situation.

She told me to immediately cancel our frenectomy appointment on Monday because it's imperative Emmett goes through therapy FIRST. She shared the name of the Periodontologist her team solely works with for the frenectomy procedure because he is the best of the best. She told me that she has never seen one of his patients end up with an incomplete tie release, which made me instantly trust that he was the best choice to move forward with for the procedure. She shared that she was currently on medical leave, so she unfortunately wouldn't be able to able to assist us from an IBCLC perspective, but due to the fact that I wasn't breast feeding or pumping anymore, she didn't feel it was absolutely necessary for us to have a IBCLC in our plan of care.

Unfortunately, due to the stress of this entire journey thus far, the increased attention Emmett requires with his condition, and my original assumption that Emmett could not tolerate my breastmilk, I made the decision a few weeks ago to stop pumping. I felt there was no reason to continue pumping if he couldn't ever tolerate my milk and I didn't want my mental health to start suffering with the added stress of pumping around the clock. I’m so sad to think that my breastfeeding and/or pumping journey could have been much different if Emmett had a proper diagnosis early on, but I’m hopeful that once he's feeling better we will be able to take advantage of the freezer stash I built up over the first few weeks.

I also want to mention that IBCLC's are trained to not only help breastfeeding and pumping mothers, but they are also trained to provide care for bottle fed infants. With that being said, we definitely could have benefitted from her care if she wasn't on medical leave, but due to discovering that we would have to pay out of pocket for all these therapies and the frenectomy procedure itself, she wanted to respect our financial situation while still ensuring we had the right resources on board to give Emmett the best possible outcome.

Despite not being able to help us, she directed me to her companies website and suggested specific therapists at a speech and bodywork clinic to get Emmett scheudled with because she felt they had the highest level of expertise, which Emmett desperately needed. Once our phone call ended, I dialed the phone number to the bodywork clinic as I knew Emmett needed to get in with them right away.

I did not know anything about bodywork prior to all of this, so I want to explain for those who don't know. Bodywork is a form of alternative medicine done by a chiropractor to help relax muscles and release body tension.

The bodywork clinic knew right away how urgent this was and offered to have Emmett evaluated on the upcoming Monday. My next call was to the speech clinic, who also knew right away how imperative it was to see Emmett as soon as possible. They offered to have Emmett come in for an evaluation that upcoming Friday. My last call was the the Peridolologist's office to get the procedure scheduled, as they are typically booked out for weeks because of how common this condition is. The office said their next opening for an evaluation and frenectomy procedure was on July 31st. After having some understanding of how much therapy is needed on average prior to the procedure, I felt confident that this date would give us enough time to work with the therapists before Emmett's procedure. The office confirmed that if his therapists didn't feel he was ready for the procedure by July 31st, I could simply reach out to get it rescheduled for when he would be ready.

The important thing to note here is that this Testhered Oral Tissue Specialist respected the fact that therapy before and after a frenectomy was imperative for positive long term outcomes. The clinic we originally had the procedure scheduled with not once mentioned anything about therapy before or even after the procedure, which could have resulted in Emmett having an incomplete tie release and having to go through this entire process more than once.

Now that you are caught up on our journey over the last two months, I want to say how grateful I am that God pointed me in the right direction not only through my research, but also through helping me find the tongue tie support group on Facebook. If it weren't for these two things, we would still be searching for answers and who knows how much longer Emmett would be suffering.

Due to your tongue being connected to your nervous system, oral ties don't just cause feeding issues, but they can effect so many different aspects of an individual's health. When they go untreated, oral ties can lead to serious health complications, such as neck and shoulder tension, migraines, sleep problems, swallowing issues, speech difficulties, breathing issues, gastrointestinal related issues, and even mental health issues and behavioral disorders.

Although our journey has been going on for two months now, in a way it's feel like it is just now beginning. Emmett still has a long road of recovery ahead of him, so I thought that starting this blog would be a great way to not only help educate our community on teathered oral tissues, but to keep friends and family updated on the remainder of Emmett's recovery. To the family and friends who are just now hearing about Emmett's condition, I do apologize for not reaching out to update you sooner. Life has truly been pure chaos over the last two months. Please continue to check back periodically for updates if you would like to stay in the loop moving forward, as I will be doing my best to post updates as time allows. And lastly for now, if you are reading this and think that your going through a similar journey with yourself or your child, please don't hesitate to reach out to me for support. No one deserves to go through this journey alone!🤍