Everything You Need to Know About Infant Ankyloglossia (Tongue-Tie)

What to Do If Your Infant is Tongue-tied

Ankyloglossia, also known as "tongue-tie", is a congenital oral anomaly that may decrease mobility of the tongue tip and is caused by an unusually short, thick lingual frenulum, a membrane connecting the underside of the tongue to the floor of the mouth. Ankyloglossia is caused when the frenulum on the bottom of the tongue is too short and tight. 

Having had two sons with Ankyloglossia, I can attest to the difficulties and challenges it causes for breastfeeding, speech, and eating certain foods, if not addressed early on. A tongue-tied infant can make breastfeeding extremely painful and may lend to the mother giving up, within a few hours, to a few days.Because of an amazing Lactation Consultant, who spotted the issue and promptly recommended a local, experienced dentist in the area of Ankyloglossia, I was able to continue nursing. Within three days of birth, we were in a dental chair, snipping the tongue-tie--and it was that quick and easy. The dentist had my son nurse immediately following the procedure, which helped with bleeding and soothed the discomfort. It was amazing how much easier my son was able to latch and how much my pain was reduced. This was 22 years ago, so it's awesome to see this be the recommended standard still today.With this, let me introduce a dear friend, former co-worker, and one of the most phenomenal nurses I've had the pleasure to know and work with, Rebecca (Becky) Boyd, BSN, RN, IBCLC. This video is her presentation on Ankyloglossia at the Colorado State AWHONN convention, April 2019. Below the video is a personal story from one of Becky's patients.If you've enjoyed this post, I'd love for you to share it with your friends and colleagues and subscribe to my blog to receive an email about future posts.


CO AWHONN 2019

Kailin's Story

My name is Kailin Hamilton, Registered Dietitian, IBCLC, and currently the Chair of the Northern Colorado Breastfeeding Coalition. I worked for WIC as a dietitian and lactation consultant, before stepping down in 2017 when our third son was born. I wanted to stay home with our three boys; Micah 6, Jude 3, and Luke 1. Having worked in lactation when Micah was born, I am very passionate and determined to breastfeed and mostly know what to expect. I am honored to share my breastfeeding journey.

Remedies for Nipple Pain as a Result of Infant Tongue-tie

Micah

Micah was born in 2013. By the time he was three days old, my nipples were cracked and bleeding. I recall buying those outrageously expensive “soothies” to get some relief in between feedings. His latch looked good from the outside and I couldn’t figure out why I was in such pain.By day five, it was so painful, my husband would bring Micah to me to nurse and my eyes would fill with tears at the thought of the pain. Micah was jaundiced, and feedings would take 45 minutes every 1-2 hours. I knew something was wrong, but again, the latch looked good from the exterior. When I was changing his diaper and he was crying, I noticed his tongue was heart-shaped. I called the hospital and made an appointment with an IBCLC, Becky. Little did I know the support I would receive for years to come from this dear woman. She agreed that Micah’s tongue should be assessed by his pediatrician. I felt so much hope that maybe we would find relief.At our appointment, the pediatrician looked at Micah’s tongue and told us he did have a tongue-tie. He said it wouldn’t have an effect on breastfeeding and cutting the tongue would be "a cosmetic fix". He said "to give it time and it wouldn’t feel so difficult once my hormones calmed down". However, I had just finished feeding and burping Micah as he spit up my blood. Through many tears, my husband and I listened to our gut and had the doctor cut the tongue-tie. I was so hopeful we would be in the clear with breastfeeding and it would be smooth sailing from there.About a week later, I was still in pain and I noticed a growing red area on my left breast and made another appointment with Becky. She agreed I likely had mastitis. I saw my doctor, and sure enough, both breasts were infected and I was put on antibiotics. I felt like we HAD to be moving in the right direction.About a week later, the mastitis cleared up, but I was still in so much pain with breastfeeding. At this point, my midwife prescribed Newman’s Nipple Cream. I started my first prescription of this cream (which provided incredible relief) and prayed we were on the right track. After one more week, I was still not healing and the pain was getting worse, so I went back to my midwife. She told me the damage was so bad, they would use stitches if it were anywhere else on my body. I was advised to begin pumping and feeding Micah from a bottle.For four weeks I pumped every three hours around the clock. I got exactly what Micah needed each time I pumped and not a drop more; which meant I never really got ahead of Micah. This was a really painful month on so many levels.On week two of pumping and still not healing, Becky called to say she learned that a steroid in Newman’s Nipple Cream may be preventing me from healing since the wounds were so deep. I stopped using the cream immediately.Becky also told me she wondered if Micah should be assessed for a labial frenulum tie. Sure enough, she was right. Micah’s upper frenulum was tight, which made it just about impossible to allow his upper lip to latch on properly. I was given a referral to an Ear, Nose, and Throat (ENT) specialist to have the frenulum assessed and potentially clipped, like the tongue tie.It took going to two ENT specialists to have his labial frenulum cut. The first ENT specialist told me that “fixing the lip tie wouldn’t help breastfeeding”. However, I got another referral to a different ENT specialist in the same office who agreed it would make a difference and proceeded to cut his upper lip.As soon as I was healed enough, I stopped pumping and went back to breastfeeding. My nipples were finally getting better, but I was experiencing a different sort of pain. I had been experiencing this pain ever since I stopped the antibiotics for the mastitis, but thought it was just a part of the healing process. I now recognized the pain was from something else. It felt like fiberglass in the ducts every time I breastfed and even randomly when I was not feeding Micah.Of course, I consulted my favorite IBCLC, who agreed it was likely thrush. For months I tried everything under the sun to get rid of this: Vinegar (everything that touched my breasts or Micah’s mouth got washed with vinegar), soap, bleach, grapefruit seed extract, Fluconazole, Nystatin, changing my diet, boiling pump parts, etc. It was exhausting. The thrush and pain finally went away when Micah was five months old.After all of this, we went on to breastfeed until he was two years old. It was an incredibly long journey, and quite a steep learning curve for breastfeeding. I am so thankful for the support that we had to allow us to do this.

Jude

Since breastfeeding was so difficult with Micah, I was pretty apprehensive about how it was going to go the second time around. Long story short, Jude’s birth was incredibly fast and being that we lived 30 minutes from the hospital, we simply didn’t make it. Jude was born on the side of the road in our car. After we knew he was ok, I looked into his mouth while he was crying and sure enough, he had that same distinct heart-shaped tongue.We ended up at a hospital we didn’t plan to be at and I worried the doctors would not see the value in assessing his tongue/lip. Instead, we had an incredibly different experience. Our doctor intentionally discharged us as soon as possible, with a referral to Dr. Scott Williams (a dentist in Greeley) who was able to get us in on day number two. Even then, breastfeeding already had that familiar pain and I started to get cracks. Using a laser, he took care of both his tongue and lip and breastfeeding immediately felt much better, with much less pain.We still had a few minor bumps along the road, including needing to return a few weeks later when his tongue tie healed back tightly to laser his tongue again. Because we took care of his lip and tongue early, before it cascaded into other problems, we were able to breastfeed mostly without pain for 16 months.

Luke

When we found out we were pregnant with our third child, I prayed he wouldn’t have this same problem but, sure enough, he did. And actually, his tongue and lip were by far, the tightest of them all.I learned a lot with both of our previous experiences. While in the hospital, I latched Luke until I started feeling that same pain. I immediately took him off the breast, hand expressed, and use a cup or syringe to finish his feeding (as you can see here in this picture).This time, we drove down to Denver when Luke was only a few days old and saw Dr. Witkoff. He used a cold laser to cut both his lip and his tongue. This was by far our best experience with healing and my most uncomplicated breastfeeding journey. Luke and I are still breastfeeding today at 20 months.I am so thankful to live where I do and have access to such knowledgeable professionals, such as Becky and Dr. Witkoff. The biggest lesson I have learned in our breastfeeding journeys is the invaluable role that support plays. I truly credit our breastfeeding success to the support I received and can never fully express my gratitude.