7 Things I Learned From My Son’s Tongue Tie Journey

When I was pregnant, I thought I knew a lot about breastfeeding. I’m a birth and postpartum doula, a childbirth educator and a lactation advocate. I have a Master of Public Health in maternal and child health. I’ve provided lactation education, supported other families through feeding challenges, and spent plenty of time talking about latch, milk supply and the importance of support.

But then I had a baby who struggled to breastfeed, and I didn’t know what I didn’t know.

Lewis wasn’t born with a strong suck reflex, and he struggled to latch, so feeding in the early weeks took a tremendous amount of work. We worked with lactation consultants, tried suck training, a supplemental nursing system, a nipple shield, and every other strategy under the sun. We kept troubleshooting, but something still wasn’t quite right and we struggled to feed effectively.

Eventually, we learned that Lewis had tongue, lip and cheek ties that were affecting his oral motor function. After several weeks of oral motor/occupational therapy, we ultimately decided to move forward with a frenectomy - the procedure to remove the frenulum from under the tongue and behind the upper lip.

Looking back, there are several things I wish I had known at the beginning of our journey, because it’s hard to wonder if having more information might have helped us get to the right support sooner.

So, here are 7 things I learned from my baby's tongue tie journey.

1. Feeding difficulties aren't always a lactation problem.

When breastfeeding isn't going well, it's easy to assume the problem is latch, positioning, or milk supply…and sometimes it is! Lactation support can be incredibly valuable in figuring those things out, but sometimes the underlying issue is something else.

In our case, I had plenty of milk, lactation support, and I was willing to do the work. But Lewis was having a difficult time using his mouth effectively to transfer my milk. He could feed and was gaining weight (probably because of my fast letdown and oversupply), but he was working much harder than he needed to.

I think sometimes parents can internalize feeding struggles as, “My body isn't making enough milk,” or “I'm doing something wrong.” But feeding is a complex motor skill for infants, so sometimes the issue is about whether your baby can effectively access the milk you have, and it has nothing to do with you.

2. A tongue tie is about more than the tongue.

Before this experience, I think I mentally filed tongue ties into the category of “a piece of tissue that's restricting the tongue.” However, it's obviously more complicated than that.

The question isn't just, “Does my baby have a tongue tie?” It's also, “What is that restriction actually doing?”

For Lewis, we were concerned about function, for example how his mouth was moving, how much effort feeding required, and how he was compensating for restricted tongue mobility by using other muscles.

I learned that distinction is really important because two babies can have similar-looking anatomy and very different experiences. I learned we should be much more interested in what a baby's mouth and body can do, rather than just what their anatomy looks like.

3. For us, OT was the missing piece.

We spent a lot of time working with lactation professionals, and I'm incredibly grateful for that support. But occupational therapy (OT) ended up being an important piece of the puzzle for Lewis.

By the time we started working with OT, we weren't just looking at whether he could latch. We were looking at his strength, coordination, oral motor function and how his whole body was working during feeding.

That helped us understand the whole picture of what was happening when we sat down to breastfeed. We did occupational therapy for several weeks leading up to the frenectomy procedure, and it didn't stop after the frenectomy. The functional work actually became even more important after the release procedure. Giving the tongue more freedom to move is one thing, but helping a baby learn how to use that new range of motion effectively is another.

4. The frenectomy is only one piece of the puzzle.

It's tempting to think of a frenectomy as the thing that will finally fix feeding, but that's not really how our experience felt. The procedure addressed his physical tongue and lip restriction, but it was the therapy that helped address the function, and we still had to give Lewis time to adjust and learn.

That was probably one of the biggest mindset shifts for me. A frenectomy isn't necessarily a magic reset button where you walk out of the appointment and suddenly everything is easy. In many ways, it is just the beginning of an easier journey.

5. Do your research before the procedure, and know what you're committing to afterward.

Trust yourself enough to ask more questions. You don't have to make a decision simply because someone tells you to. You also don't have to reject a recommendation simply because you're nervous about it.

For us, that meant asking questions, doing research, getting another opinion and taking time to understand what we were seeing with Lewis functionally.

Before Lewis had his frenectomy release, I wanted to understand exactly what we were agreeing to. What would the procedure involve? What would recovery look like? What would we need to do afterward? What kind of follow-up would be recommended?

The part that I don't think I fully understood beforehand was the post-procedure wound care!

Post-procedure care can be a significant commitment, and if you're going to move forward with a frenectomy, you want to understand that commitment before you're sitting at home with a baby who is understandably unhappy about the stretches every 3-4 hours.

For us, following the post-procedure care plan carefully was important because we wanted to minimize the risk of reattachment and give Lewis the best chance of benefiting from the release, but understanding that ahead of time made a huge difference for me.

6. Your baby's nervous system matters, and so does yours.

There were times during the process when I was anxious before we even started. I knew what we were doing was important, but that didn't necessarily make it emotionally easy. I definitely delayed the frenectomy for many weeks after it was recommended to us (plus got a second opinion from another provider!) because of my own nerves about the whole thing.

Babies are incredibly good at picking up on us, so I learned that I could help create a calmer environment by working on my own nervous system first.

Taking a breath. Getting grounded. Reminding myself that I knew what I was doing. Being confident and calm rather than apologizing to Lewis or feeling bad about the wound care.

Sometimes the most helpful thing I could do for him was regulate myself (a lesson that extends far beyond tongue ties)!

7. If I had another baby with significant feeding difficulties, I'd do things differently.

I don't know that I would automatically choose a frenectomy sooner, but I would 100% seek functional support sooner.

If our next baby struggles with sucking, latching or feeding the way Lewis did, I'd want lactation support AND an early OT evaluation. I would want to understand what was happening functionally before months of troubleshooting had passed.

We were fortunate to eventually find the right people and the right pieces of the puzzle, but I can't help wonder what it would have looked like if we'd had that information earlier.

What I wish I'd known from the beginning

Our tongue tie journey taught me that breastfeeding difficulties can be complicated.

Sometimes it's a supply issue, challenge with positioning or latch, baby's oral motor function, or a combination of several things. Sometimes you have to keep asking questions until you find what works.

Through this journey, I was reminded that feeding difficulty isn't a reflection of how hard a parent is trying. I tried really, really hard. Lewis tried really, really hard. Eventually, with the right support, things got easier.

The changes weren't necessarily overnight, and the release didn't magically make everything easy. But over time, we started to notice less pain when breastfeeding, no more blisters, less gas and digestive issues for Lewis (taking in less air), and overall calmer feeds. Lewis was becoming more efficient and coordinated, and feeding didn't feel like quite as much work for him. After spending so many weeks watching him work so hard, seeing those changes happen was huge.

I'm incredibly grateful for the lactation professionals who supported us, the therapists who helped Lewis build his strength and function, and the providers who helped us make an informed decision about his frenectomy.

Would I do everything exactly the same way next time? Probably not, but that’s okay. Parenting is learning everything you can, making the best decision you can with the information you have, and then being willing to learn something new along the way…right?! That's what this journey was for us.

If you're currently sitting in the middle of your own feeding struggle, I hope you know this:

You aren't failing. Your baby isn't failing. The answer isn't always to try harder…sometimes it's to look at the problem from a different angle.