Infant Silent Reflux Is NOT Silent – Tongue Ties and Lip Ties DO Matter


Parenting / Friday, December 30th, 2016

If your child is suffering from infant silent reflux, it’s important to know a tongue tie or lip tie CAN contribute to reflux symptoms.

When our third baby was born, I knew something was not right when I nursed her, even in the hospital. Experienced from nursing her two siblings, I knew something was different.

Something just did not feel right.

Our daughter could not open her mouth wide to nurse, even with me using my finger to open her mouth as wide as it could go. Then, once she did latch, she could not stay on. She constantly gulped air, and choked on the milk. 

Our daughter needed to be burped every few minutes or she would spit everything back up and would writhe in pain. Then, when she did burp, it was not the kind of burp you’d expect from a tiny baby. No, she burped like a grown male after they gulp down a whole can of soda pop.

Buuuuuuuuuuuuuuuuuuuuuuurp.

Seriously. Time and time again, these massive man-burps exploded from her tiny body, surprising us all. Then she’d resume eating, and repeat the same cycle of writhing and crying until she burped again.

Buuuuuuuuuuuuuuuuuuuuuuurp.  

Again and again and again. Through the feeding and afterwards.

The amount of air she swallowed was remarkable.

And the noise.

When she nursed, there was this strange ‘click

Our other two kids didn’t do that. No adjustment to her latch made it go away. In the hospital, the noise reminded me of something I’d read on Facebook in the infant reflux support group called Reflux Rebels. Several people had posted about how their baby had a tongue tie or lip tie and ‘clicked’ while nursing. Other than reading about ties there, I knew nothing about them and knew no one whose child had them.

In addition, our daughter’s tongue was ‘heart-shaped’.

The tip of her tongue was indented. I learned later this is a rather obvious sign of a tongue tie. The frenulum below the tongue is so tight, it pulls the tip of the tongue down and back, preventing it from lifting up and coming forward. With the restriction, the tongue cannot move as it needs to in order to nurse effectively. Our daughter could not stick out her tongue past her gum line, but we didn’t know that quite yet.

No one seemed to understand.

As we researched tongue ties and lip ties, we asked two pediatricians and a lactation consultant in the hospital to assess our daughter. ONE pediatrician confirmed a possible minor tongue tie but told us not to worry about it. The lactation consultant and other pediatrician dismissed the idea completely.

So, I went home blaming a fast milk let-down and a baby with a small mouth. I hoped we’d just figure it out with time.

I assumed as she grew the nursing woes would resolve themselves, but they did not. And when she began to have issues with infant silent reflux at 6 weeks, the excessive air-intake became a huge problem. 

All that air kept forcing the acid right back up and the pain it caused was obvious. Despite my initial denial that yet another of our children had silent reflux, the rapid onset of symptoms confirmed we needed to treat it right away.

This wasn’t our first rodeo diagnosing infant silent reflux.  

We knew the drill. I had already eliminated dairy and soy from my diet before our daughter was born because our other children could not tolerate them at all. In addition, I was already avoiding foods that trigger reflux in adults.

It was not hard to recognize the silent infant reflux symptoms. The characteristic refusal to feed, arching back and screaming in pain (aka. colic) were easy to spot right away. Into the pediatrician we went, feeling defeated. I nursed the baby in the office and the symptoms were agreed upon by the pediatrician. She prescribed Zantac.

After two weeks, we were disappointed to find our daughter was still just as miserable. She was crying inconsolably for at least 4 hours per day, and up to 10. I’m not going to lie, the days were rough.

While I agreed with the reflux diagnosis, I was unsettled about the feeding issues. Our other babies had reflux but did not gulp air and choke while eating.  I was convinced she could be happy if she could stop sucking air and having the acid be forced back up again.

As with our other children, we continued navigating reflux treatment options.

Two more pediatricians assessed our baby for reflux and were asked about tongue and lip ties. One dismissed us, but our primary care provider agreed there was a ‘slight’ tongue tie. However, in her experience, it would not cause issues. She recommended we see the clinic lactation consultant.

The lactation consultant was by far the most knowledgeable about ties and feeding issues.

The lactation consultant agreed there was a tongue tie, but did not know of any doctor who would cut or ‘revise’ a tie. Instead, she focused on helping moms work with it. By the end of our almost hour-long appointment, she thought the excessive air intake was due to over-supply of milk rather than anatomy. She gave me many helpful tips and we put all into practice. We tried bottles. No difference. We incorporated all her adjustments.

The clicking noise continued, as did the consumption of air.

Our daughter was now 9 weeks old, taking the highest dose of Zantac, and miserable. She cried the majority of the day and needed to be held for all her naps. Baby wearing was a necessity, but even then, she was still crying.

The doctor switched reflux medication to Prevacid. We gave it two weeks to see if it took her pain away.

She was still miserable.

The pediatrician told us she had colic and there was nothing else they could do.

It was heartbreaking. But I could not accept her answer. There had to be something else we could do for our baby.

Desperate, I asked questions on the Reflux Rebels Facebook page. They referred me to the  Tongue Tie Lip Tie Babies Support Group. With hope and no more ideas, I posted pictures of my daughter’s suspected lip tie and tongue.

before
lip-tie

People in the support group commented quickly. They agreed she should be assessed by a recommended provider in my area who not only assesses ties but also corrects them. They gave me a list of ENTs and Pediatric Dentists.

There were several in our area!

We chose a pediatric dentist because they use a laser for the procedure.

Using a laser allows the wound to be cauterized by the lazer and heals easier. Moms in the support group explained how baby experiences less pain, and there is no bleeding during the procedure so the dentist can see better and have higher precision. For us, there was no question between a laser and someone using scissors and trying to see through bleeding as they cut inside our baby’s mouth.

I expected to have to wait weeks to get in.

But a provider 15 minutes away got us in the same week. Confident with our daughter’s symptoms and the lack of effective treatment using medication, my husband and I agreed if the dentist confirmed ties, we would have her do the procedure in the office that day. We were surprised to learn our family dental insurance covered the procedure.

There was much anticipation leading up to the appointment.

I was nervous and prayed for clear answers. Was I crazy? Everyone told us this was no big deal. Was I just making it up to give our baby’s colic and uncontrolled reflux a reason? Maybe I was just trying to fix something that would only resolve with time? Yet, I was excited to know for sure if I just needed to let it go, or if this needed to be fixed, once and for all.

The appointment was covered in prayer by many.

My husband and I took our daughter to the appointment and prayed outside in the car before going in. We had complete peace going in and were in agreement.

The dentist was knowledgeable and frank with us.

Our daughter had a level 2 tongue tie.

There are 4 types of tongue ties, with 1 being the worse (where the frenulum connects to the very tip of the tongue). Our daughter’s tie connected to just behind the tip and was really quite pronounced. The heart-shaped tongue was evidence of how strongly it was being tethered down.

This type of tie could cause speech issues, dental issues and is known to cause feeding issues with symptoms we were seeing. Basically, when the tongue is tied down, it cannot do the two things it needs to do when nursing: control the flow, and create an air-tight seal. She could do one or the other. This meant she either choked or gulped air.

The dentist recommended correction without hesitation.

In addition to the tongue tie, our daughter did have a lip tie. It was restrictive when nursing, causing her upper lip to be unable to flange outward. However, from the dental perspective, the dentist did not think it would cause dental issues down the road. The decision to correct it was up to us. Sometimes, families came back to have it done because the tongue correction did not resolve feeding issues.

We decided to have both corrected to prevent the possibility of putting her through two separate procedures and recovery periods.

The procedures took 5 minutes.

The dentist used Novocaine to numb her tongue and lip because she was a little older and her tongue tie was described as ‘quite thick’. She came back wide-eyed but calm.

Did it work?

It sure did!

Our very first feeding at home (while she was still numb) was a perfect, click-free latch and she did not gulp air.

She was still numb but we knew she could do it. After that first feeding, it took several weeks to correct old habits and for her to heal from the procedures.

Her latch for the first week or two while healing was still loose and she gulped air, but not quite as much. When we knew she wasn’t hurting any more, I started breaking the latch until we got it right during feedings. It took a couple weeks to re-learn how to nurse with her now ‘free’ tongue and lip. She could open her mouth wider, and create a good seal. The gulping and clicking were gone.

We did ‘stretches’ on the tongue and lip for 4 weeks to prevent reattachment (the mouth heals very quickly). Once she could eat without choking or gulping air, the reflux medication finally seemed to work – it controlled her reflux and she was happy. We did try to wean her off of the medication but it was evident she needed it. We’ll try again later.

Today, she has reflux, requires medication, but no longer is in pain and her reflux would be called ‘controlled’.

Many doctors and even lactation consultants don’t know what to do with tongue ties or lip ties in infants. 

We found some doctors really had no experience with ties of any kind. They had no idea what to look for, or how to assess them properly. Others were aware of ties and even agreed our daughter had one, but grossly underestimated the severity.

Still, most of those who agreed there was a tongue tie were reluctant to admit it could contribute to infant silent reflux symptoms. That said, finding a doctor willing to DO something about our baby’s ties was a difficult task.

If you suspect your baby has a tongue tie, don’t give up.

I strongly suggest you follow through and find someone who is trained to assess the ties and correct them if advised to do so.

If you just have questions, the first place I’d start is on the Tongue Tie Lip Tie Babies Support Group. Their list of providers is helpful and you can ask there if anyone has seen the specific provider you are considering. You can also ask about the procedures and see pictures of what it looked like for other children.

For our baby, tongue and lip ties mattered – while they did not cause reflux, they made it uncontrollable with medication.

The correction procedure literally changed our baby’s colic to calm in 5 minutes and the recovery was no worse than teething symptoms.

Here’s our daughter, a few weeks after the procedure, with a tongue that is no longer heart-shaped. Happy, with controlled reflux.

Worth it.

now

Additional Resources

Tongue-Tie (Ankyloglossia), The Mayo Clinic

Tell Me About Tongue Ties! BreastfeedingUSA

3 Replies to “Infant Silent Reflux Is NOT Silent – Tongue Ties and Lip Ties DO Matter”

  1. Thank you. Thank you. Thank you.
    Your experience and what you describe has roughly been our life for the last 6 MONTHS with our twins girls! I knew something was wrong from a mechanical point of view and showed their funny latch to a nurse who said it was Ok and put it down to their prematurity. All was put down to their prematurity and “all” turned out to be the symptoms of silent reflux (finally medicated after 3weeks), milk intolerance (finally diagnosed after 3mths) and the lip/tongue ties (finally diagnosed and resolved 48hrs ago by a dentist in great part thanks to you! I knew deep down there was a mechanical issue causing these awful and endless trapped burps but no nurse or Dr would listen to me!). The feeds and burp issues have improved a lot already! Feeding takes 30min instead of 1hr, much smaller burps coming out easily most of the time. The girls feed 1/3 more! I will share your article as much as possible to raise the awareness.

    1. You are SO welcome. I am so sorry your girls had trouble and it took so long to find someone to really HEAR what you were telling them about their symptoms. You did such a great job following your gut and getting the help you and they needed. YOU are exactly why I wrote this post – if it helps just ONE mama or baby (or better, TWINS!), it has served it’s purpose. I hope the feeding issues continue to improve and they feel better and better! Great job mama and THANK YOU for sharing your story with me.

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