Advocating When Your Baby has a Tongue or Lip Tie

To help parents understand a bit more about how tongue and lip ties can affect breastfeeding, over the next few weeks we will be featuring stories from moms whose babies experienced these challenges.  We would like to extend a HUGE thank you to the brave mamas who submitted their stories for our blog!  We know you went through a ton of challenges and we are so appreciative that you were willing to share your stories!  If you have a story you would like to share on our blog, please send it to robinkaplan@sdbfc.com.

For more information about tongue and lip ties and how they can affect breastfeeding, please see our article:Does Your Baby Have a Tongue or Lip Tie?

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Written by Kimberly Berry

I am often referred to as a "boob nerd" by many friends. Articles, research, blogs....anything breastfeeding related always interested me. I absorb the information like a sponge. Sharing and helping moms with nursing just came naturally. I never heard of tongue or lip tie though until I was pregnant with my second. A few things I read made me wonder if some of the struggles I had with my daughter were due to a possible tongue/lip tie in her. She had self weaned recently though, so I never gave it much more thought. That reading on tongue ties proved to be invaluable to me in just a few short months however.

My handsome baby boy came flying into this world at 5:01pm on a Friday afternoon. The moment he was handed to me after his birth, I saw it glaring right back at me as he cried and took his first breaths. A tongue tie. His frenulum stretched all the way to the tip of his tongue. I kissed and nuzzled him close to calm him, warm him. Once calm, I looked at my husband and said, "He has tongue tie." My husband, confused said, "..ok?" not knowing what I knew. Not knowing how that can affect breastfeeding. Not knowing the possibility for pain and injury for me while nursing our second child. The nurse nearby heard me and chimed in to say "Oh, it's just a small one, no worries!" I told her I wanted to see a lactation consultant. She nodded her head and continued on with her work. 

I then began the process of trying to get him to latch for his first feed, although I knew that it could quite possibly be as bad, or even worse than the pain I just endured to bring him into this world. He was disinterested. So we snuggled and I tried every five minutes or so. Finally, 45 minutes after his birth, he latched. I unlatched and relatched him over two dozen times before it felt even remotely close to ok. I asked again to see the lactation consultant on staff. I did breast compressions and massage to help encourage colostrum into his little mouth that he was trying so hard to get to work correctly. Becoming annoyed, I would then ask every person that came into my room to bring me a IBCLC. I was met with "Yes, sure thing!", "You are on the waiting list", "Your nipples are just too big for his mouth"... I could go on and on with the excuses I heard the rest of that day and overnight. We struggled through each feeding. He was frustrated, and so was I. When he cried, his tongue looked like a heart. My heart broke that this was going on and help was seemingly out of reach. 

Finally, at 9am the next day, a IBCLC stopped in to "see how breastfeeding was going." I told her that I had been asking to see a lactation consultant since his birth the evening before. Shocked, she said she was not made aware we needed her. We discussed for several minutes how crucial nursing support is to new mothers and who she was going to speak with about the situation. I made my notes on who to contact as well  as who to advise of the lack of proper treatment. Then we got down to the business at hand. She agreed immediately that my son had a tongue tie, and not "just a small one" as the nurse had called it. She called right then for the ENT to work us into the schedule immediately to have it clipped. Unfortunately, we were knocked back on the list several times due to other emergency surgeries that day. While I am a patient person, I was becoming angered that the fact that my child was having trouble eating was not a concern to most of the staff. 

The next day, the day of our discharge, arrived and we were still muddling through feeds. I was starting to become very sore. Again, we were told time after time that we were next in line for his procedure, only to be knocked back again by an emergency surgery. How many emergency surgeries were there?! How many other new mothers were waiting for the same help I was??? The IBCLC I had spoken with the day before was not working. The other IBCLC couldn't get to us until that afternoon. Our nurse was sympathetic, but said this seemed to be typical of the weekend. Finally, I said enough is enough and took matters into my own hands. I looked up the ENT my daughter sees. Being a Sunday, the after hours line was activated. I left a message to see if anyone could call me back to let me know if they preformed frenulectomies on newborns. Thankfully, a sweet nurse called me back after about 5 minutes. She said that they did do the procedures, but I would have to call back in the morning for a appointment. 

We left the hospital and never looked back. I bared through the pain of the feedings until that appointment with the ENT the next afternoon. The frenulectomy was not easy to watch, but it helped so much. When he nursed when it was over, I could tell a difference, not a huge one immediately, but enough that I didn't wince up and have tears in my eyes the whole time. We only had to relatch six times instead of more than a dozen times. Each day thereafter, nursing was getting better and better. We practiced the exercises and I continued trying to heal my nipples. After several days, he started gaining weight and I was settling into being a mommy of two. Nursing became a joy again. Something I once again looked forward to. It was now my time to look in awe at my newborn and be proud of my body’s amazing ability to grow this perfect being and now continue to nourish it. 

Without a doubt, if I didn't know anything about breastfeeding or tongue ties, I would have thrown the towel in and given up. It was clear for me to see why so many new mothers do. In a mom’s group I help with, I constantly tell new mothers to check for tongue/lip ties. Even if someone says there isn't one, or if its minor and won't affect breastfeeding, know how to look yourself and find someone who will help you. You have to be your own advocate. Your babies advocate. We look to these medical professionals to guide and help us. Unfortunately, sometimes that's not always the case. It's crucial for them to receive the proper training, listen to their patients, and have resources available to help mothers and babies. It's crucial for mothers to be determined, educated, and supported. All of these things go hand in hand for successful breastfeeding. My son went on to nurse until he self weaned at 13 months.