Tongue Tie and Bottle Refusal

Stressed mum trying to feed her baby

Tongue Tie is a controversial topic in and of itself. There is generally a lot of confusion and diverse opinions about what a tongue tie is, how it is recognised, and how it should be treated or not treated.

However, tongue tie is only ever really discussed in relation to breastfeeding. This is because nipple pain and latch issues can often be attributed to a tongue tie (either rightly or wrongly), and these issues usually occur in the first few weeks.

However, tongue tie doesn’t just affect breastfed babies. It can also affect bottle fed babies.  This usually only starts to become a problem after about 6-8 weeks of age.  Unfortunately, mothers of bottle fed babies with a tongue tie that is affecting their ability to suck effectively, often undergo months of distress due to the lack of knowledge in the healthcare community around this subject. 

The aim of this piece is to raise awareness of this issue, to support parents in seeking answers when their bottle-fed baby is struggling, and to support professionals in what to look out for and who to refer to. 

The Typical Scenario

The following scenario is for a baby who has a tongue tie that is affecting their bottle feeding (not for a baby with true reflux/CMPA, although they can appear very similar). 

From my experience as a PHN and Lactation Consultant this is what usually happens:

2-3 weeks of age

Baby crying and unsettled

Baby’s demonstrate the normal developmental behaviour of increased waking, crying, wanting to be held, crying every time they are placed lying flat away from parents. Babies often posset also (spit up curdled milk), which is normal in babies about this age as breastmilk volume increases and baby’s ability to extract that milk improves also. If bottle feeding, the volume of milk per feed has likely been increased and this can also cause possetting. Usually wind has brought up some of this posset with it.  

This is normal whether breastfeeding or bottle feeding (EBM/formula). However, parents usually start to think their babies have reflux, and their next stop is their GP/PHN.

Over the counter medications

Parents are often advised by family members or a medical professional to try over the counter preparations such as Infacol, Gripe Water, Colief drops, or Colic-Calm. Parents may find a temporary improvement after using these but usually after a week or so they are back to square one.

Is it Reflux?

At this stage the baby is usually 3-4 weeks old. These parents are pretty tired, stressed at the thought that their baby is in pain, and worried about whether they are harming their baby because he/she is so unsettled and crying more.  They describe the symptoms to their GP/PHN:

  • Crying when lying flat
  • Squirming and struggling with wind
  • Vomiting/spitting up during and/after feeds
  • Refusing to feed
  • Screaming after feeds
  • Arching their backs after feeds
  • Lots of hiccuping

Intervention

Parents are often advised to do either 1 of 3 things:

  1. Try over the counter preparations like gripe water, infacol, colief etc.
  2. Change to a comfort/anti-reflux formula
  3. Start their baby on baby gaviscon or a medication like Losec.

2-3 weeks later

Stressed dad and upset baby

At this stage the baby is usually 4-6 weeks old.  He/she is on either a different formula and/or medication or is breastfeeding and getting medication. Not much has changed. The parents are told to give it 2 weeks to see an improvement. They are exhausted and sleep deprived at this stage. They are probably feeding the baby little and often, holding the baby upright for 30 mins after a feed and sleeping sitting up themselves and taking turns at night. The baby is only ever settled in mum/dad’s arms and it takes so much time to get baby to settle at all they are afraid to move. Back and neck strain become a problem for parents at this stage. The baby is also constantly over-tired and the parents are so worried about their brain development from the lack of sleep and constant crying.

They are probably contemplating switching formula again, and if they do they may see a temporary improvement, which reverts quickly back. Also if they were using a comfort formula they had to go up a teat size. If they change formula they will likely need to reduce teat size again leading to more confusion all around. 

What next?

If the tongue tie is undetected, usually the baby starts to refuse bottles altogether by 8-10 weeks. This is because babies are born with an automatic sucking reflex that by this time has become a voluntary reflex. Therefore, if the baby is uncomfortable with the feed they can reject it. For these babies, feeding time has become a battleground. They are unable to use their tongue to milk the bottle teat.  Instead, they are chomping on the teat with their gums, and then choking on the milk as it flows into their mouths, and down the sides of their chin. These baby’s often gasp and cough, and have to break away from the bottle to take a break, before starting again.  There may even be a clicking sound while drinking. They take in a lot of wind feeding this way, and parents are confused as to whether this is a wind issue or bottle/teat issue or milk issue.  

Worried parents and inconsolable baby

This may be surprising but these baby’s often tend not to lose weight, but gain in a steady slow way, usually because parents are sitting under them around the clock trying to feed them ounce by ounce in a never ending cycle of misery, exhaustion, worry, self-doubt and self-criticism: “Is it me? Am I just a bad mother? Why can’t I get this?” The lack of weight loss reconfirms the belief by the healthcare practitioner that this is reflux or allergies, but it isn’t.

Parents change formula from level 1 to comfort formula’s, and then on to hydrolysed formula’s, then on to lactose free. EBM parents try giving formula which works for a few days as the baby is not used to digesting a different milk protein so it takes longer to digest, and they seem fuller and more satisfied between feeds but the underlying problem is still there.  They are advised not to switch formulas but those who advise them don’t have to experience what they are experiencing. So they google search and search and search, knowing in their gut that something is not right.

Family members start to infer that they are ‘spoiling the baby’ because they are always up in arms and no-one else can console them. There are talks that perhaps the baby has a ‘behavioural’ issue. Parents don’t know who to turn to. Why isn’t there an Infant Feeding Specialist? Not a dietician, or paediatrician but someone who is an expert in infant feeding and takes a holistic view and can guide them in working with other members of the MDT (Multi-Disciplinary Team) to find the answers.

They change bottles, teats, formula, but nothing really makes a difference. Parents are often advised to decrease the teat size, but then the baby is unable to take more than an ounce or two as they are too exhausted from trying to suck (think trying to suck a milkshake through a thin straw).  They increase the teat size, and the baby is choking on the flow as they cannot use their tongue to milk the teat and control the flow. These baby’s develop an aversion to the bottle.

Signs that Tongue Tie is affecting a bottle fed baby

The following are signs of a tongue tie that is affecting the baby’s feeding ability: 

  • Milk flowing down the baby’s cheeks while feeding
  • Baby is chewing the teat and tends to push it out
  • Baby’s mouth is unable to stay sealed around the teat
  • Baby gagging very easily when a bottle or soother is put in the mouth
  • There may be a clicking sound while baby is sucking
  • Milk can be heard sloshing into the baby’s tummy
  • Feeds take way too long
  • May have difficulty keeping a soother in the mouth
  • Only able to get the baby to take the bottle when they are semi-asleep or distracted
  • Crying when lying flat
  • Squirming and struggling with wind
  • Vomiting during and/after feeds
  • Refusing to feed
  • Screaming after feeds
  • Arching their backs after feeds
  • Lots of hiccuping

As you can see the last 7 points on that list are also the signs of reflux, which is why parents are often mis-directed.

They try complementary therapies, change their diets (if giving EBM), and join every facebook group they can find that might shed some light on what is going on, and then someone, somewhere mentions tongue tie!!!

But…has anyone watched this mother bottle feed her baby? Likely not. It is most likely that much of the advice that has been given has been based on what the parents have described.  This makes no sense. 

So what should be done?

Health professional assessing a mum and baby

As with breastfeeding, when there is a feeding issue, the first thing an IBCLC (International Board Certified Lactation Consultant) will do is watch a feed, if not several feeds. This observation of the parent and baby feeding, plus what the parent has observed and felt will inform the IBCLC’s assessment of what the issue is and what can be done to improve things.

Yet when it comes to bottle feeding, this process of observation of the feed seems to be a rare occurrence. Unfortunately, the harsh reality is that most PHN’s and GP’s don’t know that tongue tie can affect bottle fed babies. Because it is RARE. Even if they do watch a feed (but don’t know that tongue tie ‘could’ be an issue) they are likely to think that either the bottle or teat or milk is the problem. Time is also a factor, with services everywhere being so stretched.

All GP’s and/or PHN’s should observe a full feed, when parents are having difficulties. They should watch and record:

  1. How the baby sucks- is there a nice easy rhythm of sucking, swallowing, and breathing?
  2. Note the size of the teat?
  3. Is the milk flowing down the side of the baby’s mouth?
  4. Are they gasping for breath and pulling off the bottle?
  5. Are they feeding with eyes wide in fear and fists clenched?
  6. Is there a clicking sound when sucking?
  7. Are they chewing the teat rather than sucking?
  8. Is milk flowing down the sides of their mouth?

If the HCP feels that there may be something structural going on but not sure what, they should examine the baby’s oral cavity to check for signs of tongue tie. If they do not feel competent to do this, then refer to someone who is. This may be a doctor who specialises in tongue tie revisions, or a Lactation Consultant.  Parents don’t mind that we don’t know everything. They would prefer to be referred to the person who specialises in that area.

Just to Note  

Tongue ties that affect bottle fed babies are rare. Just like tongue ties that truly affect breastfeeding are rarer than we previously thought. But that does not mean that they don’t exist and cause major issues and trauma for baby’s and their families.

It is also worth noting that true reflux (GORD) is also rare. Carol Smyth (2021 p.7) has done a lot of work around reflux and her book “Why Infant Reflux Matters” sheds much needed light on this subject, using research and evidence to draw conclusions around why the “diagnosis of gastro-oesphageal reflux disease (GORD) in babies has skyrocketed in the last 25 years, with studies suggesting that as many as 1 in 20 babies in many countries may be on medication for GORD”.  

My Experiences with Tongue Tie and Bottle-fed Babies.

In 2019, I came across my first case, and I did not know then what I know now. This baby was 3 months old and rejecting bottles of all shapes and sizes. He was a 4th baby and his mum was well experienced.  Her world was in turmoil, until she had the revision done, did all the exercises and it still took 6-8 weeks for the situation to improve.  That baby went on to wean very well and came to adore his bottle until he was 18 months. The tenacity his mother demonstrated in finding the answer was extremely admirable.

In all of 2020 and 2021, I have referred only two bottle fed baby’s for assessment and revision of a tongue tie. The first was successful due to the fact that it was detected early (<3 mths old) and the revision was done quickly.  This baby demonstrated all of the classic signs listed above.

The second was only recently, and it has prompted me to write this post due to the trauma that this mother has suffered in trying to find answers.  Her baby is 5 months old and she has had about 4 months of extreme difficulty.

I do want to state that getting a tongue tie revised is rarely a quick fix. There is no overnight reversal of all the issues. These baby’s require rehabilitation to retrain their suck, and these parents need lots of support and reassurance. I have found that the best thing I can do for these parents is to put them in touch with each other, so that they can counsel, support, reassure and guide each other.  

Women supporting each other

Conclusion

More needs to be done to raise awareness of this issue. Yes tongue tie and bottle refusal is rare, but the absolute agony, unnecessary medications and dietary alterations that families endure is staggering. Not to mention the financial burden. Parents will pay anything to help find comfort for their baby, and often the costs of GP visits, medications, formula’s, private specialists, alternative therapies, Lactation Consultants, and ultimately a tongue tie revision can add up to thousands of euro’s.

As a HCP (Health Care Practitioner) who didn’t know enough then but knows better now, I am as always acutely aware of what I still have to learn.  All HCP want to do their best and give their best care, but sometimes we don’t know what we don’t know until we know it. 

I hope that this post will get shared and discussed because, out of the people who read this someone may find:

  • solace in the recognition of this story 
  • a possible solution for what has been months of frustration
  • learn the signs of tongue tie so that another family will not have to endure the agony and hardships of misdiagnosis.

 

For more information on Tongue Ties:

Dr Richard Baxter published a book called “Tongue Tied” that is well worth a read.

Catherine Watson Genna’s seminal work “Supporting Sucking Skills in Breastfeeding Infants”  is also an excellent book for those who are interested in finding out more about normal and abnormal sucking function.

I cover the Kerry/Limerick area, but also do online consultations. Not sure what service or advice is right for you?  Why not send me an email or contact me on 087 9351797.