“Your baby might have a tongue tie”. I heard these words when our daughter was about 3 weeks old. I was having the hardest time breastfeeding since her birth (you can read our full story here). All I could think was what the heck is a tongue tie? The only association I had with this term is someone that was too shy or nervous to speak up. Our lactation consultant – who is such an amazing person – explained what it was, how it can cause a host of issues for a nursing mama and baby, and all too often how it can result in an unwanted end to breastfeeding.
A google search will result in an overload of information on the topic. Some websites try to downplay this condition, say it’s over-diagnosed, and the “surgery” is done far too often. This post is going to share my own experience with tongue tie.
How the Struggle Began
Starting on the 2nd day of our daughter’s life, I was told by hospital lactation that I needed to pump (and wash the supplies!) after every breastfeeding session and then syringe feed the baby my colostrum. I was recovering from a cesarean and obviously sleep deprived. This routine quickly became exhausting. After we were discharged from the hospital I had 2 follow-up lactation visits at the hospital. These visits were only 30 minutes and felt rushed. We did a weighted feeding and the nurse observed my daughter as she ate. At the first appointment my daughter took less than an ounce of milk between both breasts. She was supposed to be taking about double that amount. The lactation consultant explained to me that the anatomy of my breasts suggested a condition called Insufficient Glandular Tissue. In the world of plastic surgery, it is referred to as tubular (or tuberous) breast deformity. During puberty, a woman’s breast tissue simply does not fully develop. I’ve always hated the way my breasts looked. Always. So, hearing that I may have this condition was nothing short of devastating. I felt like the one purpose these things I hated so much were meant to serve had failed me.
After having a short discussion about the condition the lactation consultant palpated my breasts, which were hard and tender, and told me what she felt was promising. It seemed odd to me that my breasts were full and tender, but the baby wasn’t taking much milk. She told me to continue pumping after each breastfeeding session and feed the baby all of the expressed milk. I followed instructions, but this routine – especially having to do it alone while my husband was back to work – was really starting to take a physical and mental toll.
At the second appointment with a new lactation consultant, our daughter again only took about an ounce between both breasts. She told me that I do have insufficient glandular tissue and that I would never produce a full milk supply for the baby. I immediately burst into tears and had a hard time communicating during the remainder of the appointment. I was told that I needed to go to the store on my way home and buy formula for our daughter. We did end up supplementing with a few ounces of formula a day, which killed me inside. I used a supplemental nursing system (SNS) where you tape a tube to your breast that is connected to a container that holds milk or formula. This way the baby is still taking the milk at the breast while receiving the additional amount they need. It was always a whole ordeal to get this set up and sometimes the tube wasn’t positioned right, resulting in a lot of frustration and anxiety.
Working with Private Lactation
After chatting about my struggles with our doula, she referred me to a private lactation consultant. The lactation consultant came to our home and spent about 3 hours with us for the first appointment. She never made me feel rushed, was full of compassion, and answered every question we had. She referred us to a chiropractor that specialized in performing craniosacral therapy on infants. I know this sounds scary, but it’s not your typical snap, crackle, and pop like adult chiropractic work. It is very gentle manipulation of the baby’s skull, jaw, and floor of the mouth.
We eventually saw an ENT that diagnosed her with a posterior tongue tie. My husband and I made the decision to have the tie released. This practitioner used a laser and he was so quick that our daughter was only away from us for less than a minute. Once I latched her to feed, there was an immediate difference. I had been experiencing nipple pain and once she would unlatch, my nipples came out looking like the tip of a brand new tube of lipstick. This happened because her frenulum (the tiny piece of tissue that connects the tongue to the floor of the mouth) was too tight. Her tongue couldn’t lift enough to properly draw my nipple into her mouth. This caused compression and pain for me. It also wasn’t allowing her to take enough milk – which is why I had a low milk supply. My nipple pain and the compression were no longer there when we nursed. It was the best decision we could have made!!
The hardest part of the procedure was the aftercare we had to do for the wound. The main risk of a frenotomy (the medical term for this procedure) is that the mouth heals so quickly that the wound may prematurely reattach, causing a new limitation in mobility and the persistence or return of the symptoms I was experiencing. There were 3 different exercises we had to do a total of 6 times a day for 3 weeks. We could then drop one session per day and would be finished at the conclusion of the 4th week. The first few times I had to do it, I was so terrified and felt like the worst mommy in the universe. Babies cry when you forcefully open their mouths. And it’s not fun to do something that causes your baby to cry. After a few days I got the hang of it and it became much more manageable.
When lactation came to our house to evaluate our daughter post procedure, we did a weighted feeding. She went from taking about an ounce at the breast to over 3 ounces that feeding. What a relief! I continued to pump as we slowly introduced nursing, one feeding at a time. We stopped supplementing with formula and were on our way to exclusively breastfeeding. Even though our daughter was able to effectively nurse, I still pumped once or twice a day out of fear that my supply would not be sufficient for her. We went on to breastfeed until she was 13 months old.
How to get help if you think your baby has a tongue tie
The first place you should start is to find an IBCLC in your area. Personal referrals are likely to be your best avenue, but you can also search in a database like this one here. IBCLCs can work in hospitals, but a majority of them are in a private practice. They are more likely to come visit you in your own home, which trust me is a huge relief when you are struggling to feed your baby. However, they are less likely to be covered by your insurance company. You can still use your HSA if you have one to pay for their services.
You will then need to see a qualified ENT or pediatric dentist – your IBCLC can provide you with a list of providers. In order to book the appointment you will need a referral from your lactation consultant or a pediatrician. Please note that some pediatricians are not trained to properly diagnose a tongue tie or its severity.
Do you have an experience with a tongue or lip tie? Tell us about it in the comments.