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Hold Your Tongue – Literally!

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I’m taking a step back in time to talk about N’s tongue-tie. First, I want to introduce tongue-tie, or ankyloglossia. According to the Mayo Clinic, tongue-tie is a condition that restricts the tongue’s range of motion due to an unusually short, thick, band of tissue (lingual frenulum) tethering the bottom of the tongue’s tip to the floor of the mouth. There are varying levels of severity and the need to correct the condition, through a frenectomy procedure, is based on each individual situation and doctor’s recommendation. Basically, the frenectomy procedure consists of numbing the mouth, clipping the tissue attaching the tongue to the bottom of the mouth, and cauterizing it to stop the bleeding. I have read that tongue-tie is more common in boys than girls and that it does run in families. Interestingly, my niece was tongue-tied and I was lip-tied. There are all several kinds of tissue ties that occur in the mouth. If you are concerned your child might have one, contact your doctor or dentist.

The day N was born, during our pediatrician’s first assessment of him in the hospital, we learned N was born tongue-tied. Our pediatrician calmly gave us the details of the condition and assured us that tongue-tie is very common. Baby N’s was attached from the bottom of his mouth all the way to the tip of his tongue, creating a situation where his tongue was completely tied down. He let us know there was a chance that N wouldn’t experience any complications or challenges. He told us the main concerns would be if and how N could breastfeed and then, down the road, his speech.  After asking our questions and visiting with our pediatrician, we decided that we would wait to see how this affected N before we allowed a procedure to correct it.

Since N wouldn’t be making sounds for a few months, we focused on how he was eating. I made it clear to all of our docs and nurses from the second that we were admitted to the hospital that I wanted to breastfeed. With a severe tongue-tie, the concern with breastfeeding was that he wouldn’t be able to get a full or tight latch; that it would cause severe nipple pain and damage; and that since he couldn’t shape his tongue around the nipple properly, he would create a low milk flow. Our doctor suggested if we have trouble that we should talk to the lactation specialist about a nipple shield, a rubber or silicon shield that is placed over the nipple and looks similar to a hat.  As it turned out, Baby N and I did struggle to nurse from the get-go and we started using a nipple shield before we left the hospital. The way I understood it was that a nipple shield would provide more “material” to help N grasp the breast and shape the breast to stabilize it in his mouth. Now, I know nipple shields are incredibly controversial so although I had a very positive experience using one, they are not right for everyone and they do have a downside. (I will talk more about our experience some other time). Once we put the nipple shield into action, N was able to latch and I was able to keep my milk quantity up between nursing and pumping. So, we used the nipple shield for the first four months of Baby N’s life.

During N’s first months on the outside, he had a hard time gaining weight. We were quickly put on weekly weight checks as his weight gain was erratic; one week being awesome and the next actually losing weight. We faced many challenges, but we were never really sure if this was because of the nipple shield, tongue-tie, both or neither. Additionally, we had a host of other issues going on including a family crisis that deeply affected me and I am convinced that the stress of this situation may have affected the quality of my milk; N was also a spitter and while he was never diagnosed with GERD, a small prescription of Baby Zantac helped immensely; and a daycare (not our current provider) that did not follow our requested feeding plan.

After an exhausting four months of worry and appointments, we ultimately decided to do the frenectomy procedure. We figured this was one of the variables we could control, felt it was better to address it before longer, more severe complications arose, and we didn’t want our little boy to remember any of this. Our pediatrician referred us to an otolaryngologist.

We made a decision to see the first available otolaryngologist in our community. During our visit, we learned this doctor was absolutely the wrong fit for us and he truly scared and offended us. After aggressively shoving a tongue depressor into our newborn’s mouth and briefly examining N, he said we needed to do out patient surgery, put N completely under anesthesia, and reconstruct his mouth. As scared parents of a newborn, he did nothing to answer our questions or calm our nerves. When I asked him about putting a newborn under anesthesia he replied, “Most of them make it.” In addition to his terrible bedside manner, his staff was cold, unwelcoming and rude. Before we made it to the car, we knew we would not be proceeding with this doctor.

In our next weekly weight check we shared our experience with our pediatrician and let him know we would like to wait for one of the other doctors. Thanks to a sweet reference call to one of the other otolaryngologists, we shortly landed on a wonderful, kind, and careful doctor. Let’s call him Dr. Awesome. In our first visit, Dr. Awesome evaluated N, described the frenectomy procedure, said he would complete the procedure right then and there if we were ready, and told us there was no need to put him under. He was patient with our questions and made us feel as if we were his only appointment for the afternoon.

We agreed to move forward with the procedure that day. We swaddled N to keep him from swatting at the doc and Seano and a nurse held him tight on the table. While I was initially so scared and worried, the whole thing lasted all of two minutes and we were both able to be right in the room with him. In the end, it was a smooth and quick process. And to be honest, it seemed Baby N thought his two month shots were worse than this procedure. I want to mention just how much we appreciated Dr. Awesome. As a first time mommy and daddy we were terrified of putting our baby through any procedure and just coming off a bad run-in with a doctor that was definitely the wrong fit for us, Dr. Awesome offered the reassurance, kindness, and confidence we needed. Somehow, he made it all seem like a piece of cake. Immediately following the procedure, Baby N nursed using the nipple shield. Within 24 hours, we stopped using the shield, never looked back, and nursed until he was about 14 months.

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Turns out the tongue-tie probably wasn’t the cause of N’s weight issues. He continued his pattern of gaining strongly and then throwing us a curveball coming in lower than the week before. We did weekly weight checks for nearly eight months, trying different feeding regimens until he finally started to pork up. Luckily, our pediatrician was wonderful and valued the importance, both physically and emotionally, of breastfeeding. So, our feeding plan included nursing as N’s primary food source with supplemental formula, rice cereal, and baby food as each became appropriate.

Today, he has full use of his tongue and is a talking and eating machine. As hard as it was at the time, I’m so glad, for N and for us, that we chose to have this procedure done. Especially at a time he won’t even remember. If we are blessed with more children, and we find the condition at birth, I will have the procedure done immediately to eliminate any complications with feeding or speech in the future.

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