Our Tongue Tie Story

A year ago today, I sought out a pediatric dentist and asked him to perform laser surgery on my 4-week-old baby’s mouth...even though multiple medical professionals had said there was absolutely nothing wrong with him.

Baby boy waiting for his surgery.

 Wait, what?

Me, the mom who decided to have a cesarean instead of attempting to turn my breech baby with an external version because I was afraid it would hurt my baby. The mom who refused to let the hospital nurses bathe my baby let alone allow a doctor to touch him with a scalpel (ahem) because I was afraid it would traumatize him.

Why did I do this and why am I sharing this with all of you? I want to help bring attention to something that’s very common and gets practically no attention. Most pediatricians have outdated information on this topic and many doctors will flat out deny that it has any effect on the baby at all. I’m talking about tethered oral tissues (lip and tongue ties) and their effect on breastfeeding.

 

A Little Background

The summer before my (surprise!) pregnancy, I was still reading blogs and one of my favorite bloggers posted about MTHFR and how it related to health and fertility. I was intrigued and read every word as I was still desperately trying to figure out the cause of my migraines and hoping with each new post or article that I read that I would find my answer. Some of the things mentioned sounded familiar, but I just stored the info away in the back of my brain for a later time.

After I discovered I was pregnant a few months later, this blog post came to mind once again. I e-mailed the naturopath that I had seen a few months before because I was now concerned that I had this genetic mutation and that I was taking the wrong prenatal supplements. You see, people with this mutation (which might be 40-60% of the population) can’t absorb folic acid. Folic acid is the synthetic form of folate that is added to basically all of our grains here in the U.S. and that is in most prenatals. Not only can people with this mutation not absorb folic acid, it actually block the receptors so that we can’t absorb the folate that we do ingest in the form of leafy greens and such. (More on this in an easy-to-read blog post.) This is a problem because insufficient amounts of folate can lead to birth defects.

My naturopath, she said that I could go ahead and be tested, but that it would be easier to switch to supplements with methylated folate and B vitamins. The best I could find at the store was a prenatal supplement that contained folate (the natural, usable form) instead of folic acid.

I felt good about that decision, but then when another favorite blogger posted about MTHFR and listed tongue ties as a possible related condition. I decided to be tested since I had a pretty severe tongue tie. As it turns out, I do have the mutation. I was on the lookout for an oral tether as soon as baby boy arrived.

 

Our Breastfeeding Struggle

My sweet boy was born via cesarean the morning of May 11. Neither baby nor I were in much of a state to learn how to breastfeed. Thanks to our sweet doula and the amazing night nurses, we were able to get started, but we both needed a lot of help. I was on lots of meds, extremely uncomfortable from the surgery, and unable to move due to all of the tubes, cords, and machines that were attached to my body. (C-sections are no joke, people. I remarked that I felt like I was on one of those horrible Japanese game shows where the contestants are put in impossibly hopeless situations while everyone watches in horror. Trying to recover from major abdominal surgery while nursing a baby at least every 3 hours is not for the faint of heart!) He seemed to have a hard time with nursing and I was visited quite a few times by the (extremely aggressive) lactation consultant. On our second (or third?) night in the hospital, people came in to tell me that the baby had lost too much weight and that he may become jaundiced and have to stay in the NICU if we didn’t get his weight up. Weak and in pain, all I could do was cry as I felt that I had obviously failed him. I gave my consent for them to give him formula, but refused to do it myself. It was too upsetting. My sweet nurse later told me that he had vomited up everything that they gave him, which confirmed my worry that he would be sensitive to formula and made our options limited.

He was examined by at least 3 different pediatricians in the hospital and passed his many tests with flying colors. I asked the two pediatricians who came to our room to check him for a tongue tie and mentioned that I had a severe tie myself and that they ran in my family. Both said that he was fine and not to worry.

We were discharged from the hospital on the 15th and told to go see our pediatrician in a couple days to check his weight. When he was born on the 11th, he weighed 8 pounds, 12.75 ounces. When we went to the doctor on the 18th, he weighed 7 pounds, 15 ounces. Again, I felt like a complete failure. I was his sole source of nutrition, after all. I must be doing something wrong. I started an insane cycle of nursing, pumping, and bottle feeding. August nursed so slowly that feedings typically took 45 minutes. There were some days that I nursed him for a total of 8 hours! I told my husband that feeding him was like a full time job with really crappy hours. That doesn’t even factor in the pumping. In addition, it hurt so badly that I would sometimes stomp on the floor and yell out in pain.

We went back to the doctor the following Monday and he had only gained 4 ounces and was still below birth weight. We went back two days later, he hadn’t gained any weight. They sent me to another lactation consultant who I also asked about a possible tongue tie. She said his latch was great and she saw no problems. We had to go back to the doctor on Friday and he had finally gained two ounces and was up to 8 pounds, 5 ounces. He was still 7 ounces below his birth weight at 16 days old.

We went back on the 31st and he was up to 8 pounds, 9 ounces. We saw a nurse practitioner who assured me that he didn’t have a tongue tie when I asked her directly about it. We were given formula and sent home. Two days later, I ended up back in the hospital because I felt like I was dying. I’m not exaggerating at all. I literally felt like my body was shutting down. No one did a physical exam, but they did force me to take a Valium and sent me home with a prescription for Zoloft. (That’s another post for another day.) I ended up summoning the strength to Google my symptoms and easily discovered that I had a really terrible case of mastitis. This is common when the baby isn’t nursing correctly. I was able to see my doctor and begin antibiotics the next day.

I’ve had a healthy distrust of medical professionals for years now. You guys, they’re just people. They only know what they know. Most are overworked and over stressed.You HAVE to be your own advocate and do your own research. I had tried to speak up about my concerns about tongue tie, but no one took me seriously.

Trusting My Mommy Intuition

I joined a group on Facebook called “Kansas Tongue Tie Education Group” and learned a great deal of information in a short amount of time. Apparently, there are only a couple pediatric dentists in the entire KC metro that truly know how to assess and revise tongue ties. I called for an appointment and we were seen the following Monday. Sure enough, baby had both a lip and a tongue tie (class 4 and class 3, if you’re saavy). His lip tie was as severe as they come and I chose to have it revised that day. He had a posterior tongue tie, which isn’t super obvious to the untrained eye, but can cause a lot of issues. I noticed an improvement after his lip tie was released, but went back two days later to have his tongue tie released.

We went to a pediatric chiropractor that Friday and he received CranioSacral Therapy that Saturday. “Bodywork” is usually an essential part of successful nursing following the release of an oral tether. Some babies improve right away with no bodywork, but most need the extra support.

His tongue tie was released on June 8th. We went back to the pediatrician on the 27th and he was up to 10 pounds, 14.5 ounces! What a difference! I told her all about his lip and tongue tie release and what a huge difference it made and you know what? She blew me off!

Breastfeeding got easier and easier and we are still going strong now at almost 13 months. Baby boy has received regular chiropractic adjustments as well as CranioSacral Therapy. My baby who was labeled as “failure to thrive” measured in at the 50th percentile for weight and height at his 1 year appointment.

As you can tell from my experience, this is not something that is common knowledge or part of mainstream medicine. I hope that in sharing my story, I can help others and bring awareness to something that affects a lot of people. I provided a lot of links if you’re wanting to explore this topic further. I realize that my links are mostly to blog posts, but that’s my favorite medium for learning about health issues. Most of the posts have links to sources and medical studies if that’s your thing.

If You Suspect Your Baby Has Ties

I would recommend finding a Facebook group specific to your state. There’s little that will be more helpful than local parents who have been there/done that. They will be full of good advice and support.

Find a really good lactation consultant. They are not all created equal! In fact, I’ve heard that many lactation consultants that work in hospital settings are not allowed to discuss ties at all. If you’re local, I found Molly at St. Luke’s South to be incredibly helpful and knowledgeable on the subject. She runs a free support group on Mondays, you can schedule a private appointment with her, and she is also incredibly helpful over the phone.

This site is a goldmine of information if you have the time to research on your own.

Hopefully, through a FB support group or an LC, you can find someone who can assess and, if necessary, revise your baby’s tie(s).

Aftercare is extremely important. Hopefully the doctor that does the revision gives you detailed instructions on how to care for the incision site. This is not always the case, however.

Our provider didn’t emphasize the importance of bodywork, which is a huge shame. Luckily, I knew that August needed it, but I wasn’t given a ton of direction. If I knew then what I know now, I would have done things differently. If you’re in Kansas City, my top recommendation would be to see Arsenio Arellano for CranioSacral Therapy. I’ve also heard amazing things about First Choice Chiropractic, but there was a three month wait to get an appointment when I called last summer. Probably has a lot to do with the demand for this type of support being much greater than the resources available.

Finally, an orofacial myofunctional therapist (OMT) can help retrain baby’s sucking if that extra support is needed. We didn’t know about her for baby, but my daughter and I have both been working with Kathleen Elder. She’s wonderful to work with and she has a wealth of knowledge that she’s eager to share.