“Your baby might have a tongue tie”. I heard this when our daughter, Olivia, was about 3 weeks old. I was having the hardest time breastfeeding since her birth – read our full story. 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 at the time 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 and premature end to breastfeeding.
A google search will result in an overload of information on the topic. Some downplay the condition, claim it’s over-diagnosed, and say the procedure is done far too often. This post will share my own personal experience breastfeeding my baby with a tongue tie.
How the Breastfeeding Struggle Began
Hospital lactation had me pump (and wash the supplies!) after every breastfeeding session when Olivia was only two days old. We then fed her my colostrum through a syringe. I was recovering from a cesarean and obviously sleep deprived. This routine quickly became exhausting. 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 Olivia 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. Sometimes referred to tubular (or tuberous) breast deformity in the plastic surgery world. 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 a short discussion about this condition, the lactation consultant palpated my breasts. They were hard and tender. She said the amount of breast tissue she felt was promising. It seemed odd to me that my breasts were full and tender, but Olivia wasn’t taking much milk. She told me to continue pumping after each breastfeeding session and feed her of my expressed milk. I followed instructions, but this routine – especially having to do it alone while my husband was back to work – really took a physical and mental toll on me.
We saw a different lactation consultant at the second appointment. Olivia again only took about an ounce between both breasts and her weight gain wasn’t great. She told me I have insufficient glandular tissue and that I would never produce a full milk supply. I immediately burst into tears and had a hard time communicating during the remainder of the appointment. Lactation said I needed to stop at the store on my way home to buy formula.
We supplemented 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 allows a baby to continue taking milk at the breast while receiving the additional ounces they need. It was always a whole ordeal to get this set up. 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 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. He was so quick! Olivia was only away from us for less than a minute. Once she latched to feed, there was a noticeable difference. I had been experiencing nipple pain when she fed. Once she would unlatch, my nipples looked like the tip of a brand new tube of lipstick. Her tongue couldn’t lift properly to 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 for the wound. The main risk of a frenotomy (the medical term for this procedure) is that the mouth heals quickly. The wound could prematurely reattach, causing a new limitation in mobility and the persistence or return of the symptoms I was experiencing. I was terrified the first few times I did them – 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. 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, your insurance company is unlikely to cover the full cost. Ask for a superbill to submit to your insurance company for a partial refund. You can also use your HSA if you have one to pay for lactation services.
Finally, 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.