My Son’s Undiagnosed Oral Ties

Below is our experience with our son and his oral ties that were missed for two months. This is not medical advice, rather I think with sharing our stories we can help see what we didn’t see before, or help find a path we never knew existed. I hope this post does that for you!

After hours and hours (days, really) of labor I gave birth to my sweet little baby. For me, the baby was in my arms and everything and everyone around me was just buzzing. It was electric and it was chaotic, but it was a song and dance that everyone in the room knew but me and my husband. After all, it was our first time dancing. There’s tests, there’s questions, there’s information being told. It’s wild! But then in my arms was this beautiful perfect little human being in his first few minutes on the planet. In my arms time is absolutely standing still.

At the end of the song and dance, me and my crew are taken to another room in the hospital for recovery. There information is given and just swirling around my head because my mind was still trying to catch up to the events that just occurred. After all the information, after the nurses helped me to the restroom. After the nurse helped me to try and breastfeed. More songs, more dances, and I’m not really staying on beat.

Then the information stops, the door shuts, and then there I was with my new perfect little son & my husband. It was quiet because my sweet little boy was sleeping. And so was my husband, hah! The silence was absolutely louder than the song and dance of information and tests. Because in that silence were my thoughts which were consumed by the fact that here in this clear bassinet is my baby and I am tasked to take care of him with absolutely no instruction manual. But deep in my soul I knew that was okay, we would learn as we go. And thus, welcome to motherhood!

My son was born 4 weeks early, and although he got to stay in our room his first night he was admitted to NICU the next morning. Which kicked off the hardest 5 days of my entire life. His entire NICU stay is another story for another time. In NICU the nurses told us he had some difficulty eating. They had started him on formula while I pumped my colostrum. During his stay we had advocated for him to be seen by the Lactation Consultant. She helped me with pumping and helped us choose the perfect nipple for his bottle and which bottle. She tried to help with his latch but it was not great. Maybe it was from the tube in his mouth? But when we got home we would find out that the latching issues didn’t stop when the tube was removed. Throughout his entire time in NICU no one had checked my son for oral ties. Which felt like a big miss in their care in NICU. If there was some kind of protocol in place to help check for them then I truly believe his stay would have been shorter.

When we got home it was so good to be home with our baby! It was like a breath of fresh air. It was a sigh of relief! It was all the best of things. But at home Ocean still had a hard time latching. It would take multiple times for him to latch and even when he did he would make noises and he did not have a great seal. Milk would drip down when he would eat. We were still supplementing with formula and he would also make a noise when he bottle-fed. But he was still gaining weight and eating well otherwise.

We met with his pediatrician the day after he was released from NICU. He was doing great! So there red flags & his oral ties were missed again.

My son continued to struggle with breastfeeding and I just knew something wasn’t right. He would have really bad gas, and would cry what seemed like more often than was “normal”. He was also born early so he was very sleepy newborn and would fall asleep before finishing some feedings. So we scheduled an appointment IBCLC (International Board Certified Lactation Consultant) at about 1.5 weeks. She made house calls and was able to meet us in our home which was great. She did a weighted feed which confirmed he was getting enough milk each session. Which was a sigh of relief for me & my husband! She also checked my son for oral ties, which was starting to be a suspicion of mine. She told us he did not have any orals ties & gave us some tips & tricks for breastfeeding. Again, his oral ties were missed once more. The IBCLC also recommended using nipple shields which would help him with latching. They helped a lot! So did the different positions she recommended. Everything helped, until it didn’t.

The day after seeing the IBCLC I went to ER because I was extremely tired, had chills, a fever, high heart rate, was dizzy and increased postpartum bleeding and pain. My doula recommended I get to ER as quickly as I could, and I am glad she did because she saved my life! The symptoms I was experiencing was from postpartum sepsis. It’s so important to know the signs of sepsis. You can see them here. And all of this is another story for another time as well! But that put a bit of a pause on our breastfeeding journey, and my husband was at home on his own for 24 hrs with bottles and formula. The next day both my husband and son came to join me in my stay at the hospital until I was released 3 days after being admitted.

My son did great when I was at the hospital! I pumped while my husband Jeremiah was at home formula feeding the baby and continued pumping when they joined me at the hospital. When we got home we got back on the breastfeeding schedule we had established with our IBCLC. In the weeks that followed our appointment with her I would periodically get clogged ducts. About 2 weeks after our appointment my son wouldn’t feed without the nipple shields. Which was a huge concern for me. While I think the nipple shield was a very helpful tool for me, I was worried because I did not want my son to have nipple confusion from the shield, or for the shield to effect his ability to get a deep latch and end up effecting my supply. So we were working towards weaning off of the nipple shield. I was also doing triple feedings every 2 hours and I wanted to work toward only breastfeeding exclusively.

Because my IBCLC examined my son’s mouth for oral ties and confidently did not see any, I put the idea of him having oral ties out of my head. But throughout the first two months of his life his gas would get worse and he was constantly crying. I would say that he had colic, although he was never formally diagnosed. Breastfeeding became increasingly painful for me with clogged ducts, a shallow latch and compression of my nipples. My son would also get breastfeeding blisters on his lips from his shallow latch, which didn’t hurt him but was a sign of his shallow latch. I was starting to get cracked nipples and blisters that were so painful I would cry every pumping and nursing session. But I was determined to breastfeed! My husband and I had infertility for 7 years and our son was conceived through IVF, again, another story for another time. I had always wanted to breastfeed the first two years so I was determined to make that happen after waiting so long for our little one!

It didn’t seem like formula helped relieve the gas or colic either. We were using the formula the NICU had recommended, but ended up switching to an European brand and he had less gas, but was still very colicky. We also gave him probiotics regularly and changed brands. Sometimes it seemed to help, but most of the time nothing seemed to help him. The first two months of his life were so very hard and it was so discouraging to us as parents. But again, I was told by a professional that he definitely did not have oral ties, so we didn’t know what else it could be.

Our son also began showing signs of body tension and having a preference in a side for feeding. In fact, he had so much tension in his body he rolled extremely early. At first we thought he was just hitting his milestone early but it is a sign of tension in the body. So he started seeing our chiropractor when he was about a month old for the tension and gas. Our chiropractor said his body did have a lot of tension, and she noticed he had a high palette as well. He also started Craniosacral Therapy with her. She examined his mouth to see if there were any obvious signs of oral ties, she could not see any but told me that she was not qualified to properly assess them. I informed her that our IBCLC had examined him and did not see any signs of oral ties. A few weeks later as I kept telling her about our breastfeeding issues, she encouraged me to get a second opinion and that IBCLC cannot diagnose oral ties. Around the same time my husband noticed thick skin connecting my son’s lip to his gums that even wrapped around his gums. We realized he had been sleeping with his mouth open since he was born, which is a tell tale sign of oral ties. So we went with her recommendation of getting an official assessment at a place that specializes in CO2 laser frenectomies.

We called for an official assessment for oral ties and the office was able to squeeze us in within a week of calling after we asked to be put on the waiting list if there were any cancelations. On the phone with the office they asked me a number of questions, and I remember getting the call while we were out and answering the questions in a parking lot. I was almost in tears because someone was describing exactly what my son was going through and what I was going through. For the first time I felt like we might have some answers. After speaking over the phone I was positive that he had oral ties, and we asked to be put on a waiting list. I remember being extremely nervous about the appointment and especially if we proceeded with the frenectomy because I had read about it and also followed influencers whose babies had oral tie releases too. I knew it would be a painful procedure, but even worse, the exercises would be painful for the baby but necessary for the oral ties to not reattach. Then a few days before his assessment my son had one of the worst gas & colicky days he’s ever had. He cried from morning until night and nothing would soothe him. Until it was about 7pm and he was ready to go to sleep. It was awful and I thought to myself that doing the procedure would be hard but also not doing the procedure would be hard. At least after the procedure there was a chance of relief for our son!

The office was about 2 hrs away from us so we left that morning and my son slept in the car on the way there. What a relief because he hated the car and would usually cry the entire two hours! We go to the office, and the staff was extremely friendly. We meet the doctor and began the assessment. She walked in and and watched as I nursed my son and almost instantly said he had oral ties. She also examined his mouth and let us know that he had 6 oral ties: a lip tie, a tongue tie and 4 buccal ties. It felt like the assessment was too quick for such a big decision, and how did she know so promptly? But looking back now that we know the signs it was easy to tell!

My husband and I had a moment alone and we decided to move forward with the CO2 Laser Frenectomy. We gave him some baby pain reliever 30 minutes prior to the procedure. They took my son to the room where they perform the frenectomy, and recommended that parents not see it because it can be hard for both the baby are the parents. Plus it is only a 90 second procedure. This is my only regret! After looking into attachment theory I wish we would have been in the room with him during what was probably a traumatic experience for him.

Hearing his cries from the other room was awful. The doctor brings in my son immediately afterwards and we are able to comfort him. I nursed him and comforted him. It honestly was a pretty traumatic experience. His pain started to subside within a few minutes of us comforting him. Before we left we were given instructions on how to do the stretches on the healing wounds. We would need to do them every 4 hrs for 2 weeks, both night and day. While we were in the office we had to give him his first stretches. Jeremiah did an amazing job! I could not do them in the office, I was crying. I just could not do them! Thank God Jeremiah was able to help our son by doing them.

Our son thankfully slept on the way home too!

The first few days after the procedure were awful. We were giving our son baby pain reliever to help with the pain as he healed. I also did a lot of skin to skin which seemed to help him a lot. We could tell the stretches were still painful for him and we had to do them every 4 hours. It was really tough! After the first two to three days he started to feel better and everything was healing really well. The stretches were still awful but you could tell they hurt less and less as each day passed.

During these two weeks his breastfeeding had improved greatly, my pain was gone almost instantly! He had less crying and gas than ever before. It felt like we had finally turned a corner!

We made it to the two week mark and went back for his checkup. Everything healed wonderfully and none of the ties had grown back! We were then given the instructions to do the stretches now only 3 times a day for the next 3 months.

I think around the two week mark I also started noticing how much my son started smiling. He had smiled before, but it was never a wide open smile. And he didn’t smile that often. I honestly thought he was just a more serious baby. But since his oral tie release it was like my baby’s personality had started to come alive! I couldn’t believe I never noticed how restricted his mouth movement was before. But he has the best smile! And he was giving us a lot of big gummy grins after the oral tie release, it was heaven.

I remember telling Jeremiah it was like he was a completely different baby. His sleep improved, he was smiling more, he had way less gas, he also seemed to just be crying only when he had a need and not constantly crying throughout the day. He still had some tension so we continued going to the chiropractor.

I had followed a first-time mom on Instagram whose daughter had oral ties. She spoke about how she had to do different therapies afterward that significantly helped the healing process for her daughter. At our son’s frenectomy appointment I asked the staff several times if I needed to start with a Feeding Therapist or Occupational Therapist for his recovery. They said they had one that came in once a month that came into their office and we were welcomed to see them. They also printed a sheet of Chiropractors and Therapists they recommended. But besides that we were not really given a path towards recovery besides the at-home stretches. Maybe it’s because they wanted to be the one-stop shop? Maybe it’s because sometimes all a baby needs is the frenenctomy and then they are great in breastfeeding and all milestones? But that was not the case for us. And I do feel like the frenenctomy office was incredible, but the aftercare path could have been better.

As soon my son had his oral ties released he was a breastfeeding champ! His latch improved very quickly, and my nipple pain ceased. His gas improved and he was an overall happier baby. It was incredible! But within the next few weeks I noticed the pain starting to return. He would start to compress my nipples and they would crack, bleed and have blisters again. I did discover one of the best things for sore nipples during this time: Silverettes! I highly suggest getting the silicone ring with the Silverettes. While that helped the pain, we needed to get to the root cause.

I look through Yelp to find Feeding Therapists. No one I knew had gone this path, so I did not have any recommendations. So we chose one through Yelp and we were actually really lucky! I scheduled an appointment on her website and realized the sessions would be at her house, which is a much more relaxed environment. Which was great!

Within the first session with our Feeding Therapist, she helped me with a few different positions which relieved the pain of nursing and helped my son’s latch! We also showed us a lot of tummy time exercises we could do at home with our son to help him achieve his milestones. Because what we did not realize that because of his oral ties and tension he was a bit behind on his milestones. For 3 months we did Feeding Therapy, which started out at weekly appointments and he improved they went to every couple of weeks. And for one hour my son would do a fun but intensive tummy time work out with her & we’d go home and practice those same exercises with him several times a day. With her help we were able to get him mostly back on track!

There were a few concerns our Feeding Therapist had, so we ended up being handed off to an Occupational Therapist she recommended. We worked the OT online and did video calls with her. Which ended up being a lot easier with our schedules. We only worked with her for a handful of times over the next several months. It was the same as the Feeding Therapy, we did a fun but intense 1 hour tummy time session and she would give us exercises to do during tummy time, and we would do those exercises with my son several times a day. She was able to get my son back on track fully, and helped him all the way through crawling!

One of my favorite before and after differences I see in my son is his smile. It is from ear to ear now! I look back on pictures and I can see how strained or restricted it was before. I wonder sometimes how I could not see it then! But there is absolutely nothing better than that smile.

He has also started eating solids since and now eats like a champ! He loves trying new foods and enjoys learning to eat. First with his hands and now he insists of silverware. Sophisticated, hah!

The procedure and the immediate healing period were the absolute hardest, but I would do it over again. There is just such a difference in his quality of life now vs before. And with a great team of care for the procedure and afterwards, he is just thriving now!

They say that the oral ties are hereditary and if one child has them it’s very likely the next child will too. I hope that does not happen in future for our next child, but if it does we will be so much more prepared than we were!

Parenting does not come with an instruction manual. I certainly did not see any of this coming, and truly wish there was a guide for it, hah! But that is the wonderful part about community and sharing our stories. We can hear and learn from each others experiences. Hopefully this post helps you and your path for your little one!