I hear the comments all the time: “She says every baby has tongue tie and sends them off for surgery.” “Lactation consultants just say there is a tongue tie when they don’t know how to fix the latch.” “I asked my doctor if my baby was tongue tied but he said since she can stick her tongue out, she is not tongue tied.” “Tongue tie is just a breastfeeding issue. You need to just tough it out or quit breastfeeding. Don’t put your baby through that procedure just so you can breastfeed.”
I could go on and on and on. The reality is that tongue tie is not just a breastfeeding issue. A tongue tie, by definition, restricts normal tongue function. Undiagnosed tongue tie may result in difficulty swallowing, dental issues, reflux, digestive disorders, sleep apnea, speech issues, or failure to thrive. The tongue needs to move in numerous ways to function well – it not only needs to extend past the lips, it needs to lift (both the tip and the back of the tongue), it needs to move in a smooth wave-like motion and it needs to be able to move side to side in the mouth. Think about the things your tongue does just while eating – it draws food into the mouth, it moves food to the jaw for chewing, it mashes it against the roof of the mouth (palate) and then it moves in a wave to carry food to the back of the mouth for swallowing, helping to close off the airway so that you don’t aspirate or choke. After you have eaten, your tongue moves all around in your mouth, freeing food that is trapped in or between the teeth. If there is tongue tie, it will affect tongue function to varying degrees. Sometimes the frenulum is thin and stretchy and barely affects function. In this case, a release (sometimes called a clip) may not be necessary. Sometimes the frenulum is thick or very tight, preventing the tongue from moving well at all. In this case, releasing the frenulum early may prevent many on-going issues. Breastfeeding is not the only thing tongue tie affects, it is just the first thing. The following is the unedited story of one mom and baby caught up in the controversy of whether or not tongue tie should be treated:
The Hardest Thing I’ve Ever Done
When I learned I was pregnant with my second child, one of the things I was most excited about was the nursing relationship. My daughter, A, was nearly two and was slowly but surely weaning herself. Though I was ready for it to be over with her, I missed the hours of cuddling a sweet, squishy baby while she ate til her heart’s content and dozed blissfully on my chest. Little did I know I would only get a few weeks of this precious time and I would be fighting to nourish my baby at all.
When my first child was born, she had a fairly moderate tongue and lip tie. Encouraged by our midwife to get it cut via a laser frenectomy, her ties were corrected when she was two weeks old. Previously, the pain had been incredible for me when she latched, she had a very hard time transferring the milk, and she was losing weight. Her latched improved immediately with the lasering and the pain vanished. Aside from an occasional bought of thrush, our troubles were behind us. So, armed with the knowledge of latches, positions, shields, nipple creams, and persistence, I was confident that nursing with my new child would be a cinch. I was prepared for the pain.
During my pregnancy with H, I began to hear more and more talk of how maybe not all ties should be lasered. Mothers were being encouraged to work through the ties. If they had the tenacity to do all things “naturally” it would be better for the baby. I heard the comment quite a few times that frenectomies were the “easy way out” and it was overdone. Even our pediatrician discouraged tongue tie corrections and said they usually just fix themselves. I began to doubt my decision to correct A’s mouth as an infant and wondered if maybe we could have worked through it. Maybe I gave her unnecessary pain for my own comfort. I guess you could say I drank the kool aid. So, when H was born and had the ties I had expected her to have like her sister I was faced with a hard decision. Her lip was considerably worse than A’s had been and couldn’t fold up at all. Her tongue tie was extremely posterior but seemed to have good movement. My husband and I decided to at least still consult with Dr. Oser, the same dentist who had corrected A’s ties.
In the week before H was seen, the pain of nursing was off the charts. Thankfully I was armed with oils and nipple creams to deal with the blisters, bleeding, and raw skin. Despite being adjusted by our chiropractor mere hours after her birth and once more a few days later, my newborn seemed to also have extreme trouble turning her head and opening her jaw very wide. I put this off as just a result of her very quick birth (only twenty minutes of pushing and four hours labor total) and that her shoulders got stuck since she was a ten pound baby. Only months later did the connection to her ties make itself obvious.
During our consult with Dr. Oser, we talked for nearly half an hour before deciding to clip H’s lip but to leave her tongue. The doctor said she seemed to have enough flexibility if I wanted to leave it and he wouldn’t push me. I didn’t want her to deal with the recovery pain. I regret my decision every day. Every. Day.
H healed well and quickly after her lip clip and at first seemed to be fine. Her latch was a little better and I wasn’t in anymore pain. But as the weeks went by, it began to become clear that something was off. She was gaining weight well and my supply was great but I constantly had to get her adjusted by our family chiropractor and she was beginning to refuse to nurse on my right breast unless I held her a specific way with absolutely no pressure on her neck and not having to turn her head at all. It progressively got worse and worse until she refused to eat at all. For about a week, the first couple days after her chiropractic adjustment she would be okay and nurse well but just reverted right back after a little time. After a while, not even adjustments helped any longer. She was nearly three months now and as my milk regulated, my supply began to drop. H just couldn’t keep it up with her nursing refusal and the pump I had couldn’t keep up either. I had begun to see a second chiropractor just to keep H in constant alignment. This chiropractor suggested a few sessions of craniosacral therapy. Since H was born so quickly and was so large, her cranial plates didn’t have time to slowly adjust in the birth canal and it was causing pressure, as well as tension in her neck and shoulders. So, we tightened the belt on our budget a little more and began CS therapy.
As with chiropractic care, the therapy at first helped incredibly and my baby seemed to be a bit more herself. But, within a couple days she went right back to screaming whenever it was time to nurse. By this point, I could only feed her if she was asleep or half asleep, bouncing on a yoga ball, pulling out her pacifier quickly and stuffing in a nipple before she could realize what was going on. Sometimes not even that worked and she would choke and cough once milk entered her mouth. I began to realize she was just getting worse and could barely swallow without gagging or crying in pain. Eating hurt my baby. She was losing weight and even the desperate times I fed her bottles, she still wasn’t thrilled about eating and fought the food. She began to cry when she smelled milk, or saw my bare breast, scared that she would hurt again.
One day after a complete melt down, I sobbed my heartbreak, frustrations and confusion to a group of my mom friends. Along with the much needed sympathy, love and prayers I received, it was also pointed out that maybe there was a link with the tension in her little body to the tongue tie we had decided not to clip. A good friend had been on a similar journey with her son, his severe tongue tie caused so much residual tension in his jaw and mouth that even after it was released, he had trouble nursing. Despite physical therapy and chiropractic care, he eventually refused the breast all together, and began to associate it with pain. Just as H was beginning to do. Knowing that even if I wanted to go back to Dr Oser to now clip her tongue tie I couldn’t, devastated me. I didn’t have the funds. With only my husband working, we were struggling already to keep up with H’s therapies. I was faced with the fact that I may have very well completely ruined my nursing relationship with my infant because I chose to believe the new rumblings that frenectomies were unnecessary and overdone. And now my child was in constant pain. Even making the decision to go to purely bottles and pumping or formula would only be putting a band aid on a broken leg. And then good Karma unexpectedly embraced me.
When I was pumping for my older daughter, I had an abundant supply and pumped more milk at work than my daughter could drink. Over the course of a year, I donated hundreds of ounces to my friend who’s son had refused the breast. It was a simple act of empathy for a fellow mother, and I never expected it to help me so much two years later. My friend approached me and asked that we let her pay for H’s frenectomy as thanks for all the milk I had donated. Words cannot express the gratitude I felt and I was filled with hope.
I made an appointment with Dr Oser, but also decided to consult with a highly spoken of LC in my area. Mellanie graciously worked me into her schedule just a few days later and I anticipated the visit with both fear and hope. What if the news was good and H could one day nurse well again? What if it was bad and I was told that it was too late and while we could fix the physical problem, she would never nurse without a fight?
Mellanie looked her over and confirmed that H had a very thick and posterior tie. All flexibility she had had at first was gone and her tongue was all but glued to the bottom of her mouth. When she tried to swallow, it humped up in the back and explained the sensation of odd tickling I felt when she suckled. After watching her eat once I finally got her to latch, listening to her drink (and choke), and feeling along her mouth and jaw, she confirmed that if I didn’t correct the tie it wouldn’t matter how much therapy we did. The tension caused by the tie would come back again and again, it wasn’t being released all of the way. After Mellanie gave me a list of homeopathics to dissolve into water, tips on the exercises I would have to do with the wound, and a link for suck training, I was a bit more optimistic and confident about H’s impending appointment. Even if this caused H to even more shy away from the breast, at least now she wouldn’t be in pain. She wouldn’t cry every time she swallowed a mouthful of milk.
After H was brought back to us after her frenectomy, Dr Oser made the comment that this was one of the very worst grade 4 ties he had ever seen, so thick and webbed out. Much to our surprise, H didn’t seem to be in hardly any pain. She didn’t seem to need the Motrin or the homeopathic mixture I made. She even eagerly ate once we got home. It seemed that she felt more relief than pain. As I had steeled myself for a complete refusal of the breast, I never felt such a sense of overwhelming relief. Unfortunately not all nursing sessions would be this easy as our journey continued.
Stress consumed both my child and I and began to leak out to touch my husband and older child. My whole day, every day, revolved around when and how I could feed H. The room needed to be dark and quiet, I needed the yoga ball to calm her, or I needed to catch her sleeping and get her to dream eat. Fear of not being able to feed her kept me from leaving the house for more than an hour and prevented me from seeing family and friends unless they came to me. Even then, there were times that despite all efforts to nurse, I had to pump and feed H a bottle. The fear of the breast was still there and the frustrations she felt from me weren’t helping. I decided to let go. If within 15 minutes I couldn’t get H to latch and nurse, I would pump and give a bottle. I would bring a bottle when we went out and not confine my family to the house. I accepted that my sweet daughter may very well never happily nurse. Never look to nursing for comfort and safety, as my first child did. I would provide breast milk for as long as I could, but if I eventually needed to provide formula instead, I would do it knowing I had done everything I could.
I continued with CS therapy for a few more weeks and continued seeing our chiropractor twice weekly, and very slowly, I saw my little girl begin to get better. The number of bottles I had to offer began to drop. Soon she began to refuse them altogether. I learned how to coax her to the breast instead of having to only trick her, and slowly taught her that eating was no longer scary. She wouldn’t gag and choke every time she got a mouthful of milk. It no longer hurt to turn her head and snuggle up to eat, or nurse herself to sleep. Now at six months, we have endured over three months of this journey and I know it still isn’t over. On a few rare occasions, H has comfort nursed, but it isn’t the norm. Sometimes she will start nursing without being sleepy or asleep and sometimes we have sweet moments where she will pet my cheek or arm, but the yoga ball is still an essential piece of furniture in our house for at least half the sessions. My sweet baby is miles better than she was, but this still isn’t the happy, easy breastfeeding life I had dreamed of and looked forward to. But its worth it, and I still fight for it every day and cherish the happy sessions we have.
Of all journeys in my life, this is by far the hardest I have ever done. It breaks my heart knowing that I am not the only mom by far that has and will face this hard journey. I learned from Mellanie, my LC, that my story is not unheard of, or even unusual. H fit the pattern of posterior tie perfectly, and many moms who are faced with this are shamed to think its their fault. They feel like they have to work through it and if they give up then they didn’t try hard enough. Not only are posterior tongue ties frequently overlooked, but mothers are being encouraged to not cut them. I encourage every mother to research ties, frenectomies, and body work like CranioSacral therapy and chiropractic care. Don’t let any doctor, peer, or another mother shame you or make you feel guilty for considering the quick and simple surgery to correct your baby’s mouth. Through all of this, I hold onto the hope that my and H’s story will help others to know they are not alone and there is a chance. If my stiff, sore, and fear filled baby girl can come around to wanting to eat once more and snuggle at her mother’s chest, there is hope for all tongue tied babies. Speak of these therapies and ties, let everyone know the truth and the hard journeys that I and other mothers have been on. Help improve the breastfeeding world.