The hidden cause of feeding problems? (however you feed your baby)

It’s not always obvious, the tongue can look ENTIRELY normal to the untrained eye… Sometimes it’s pulled into a heart shape or the attachment may be visible on the tip of the tongue? But this is just one type, others may be missed by many health professionals, yet a hidden cause of serious breastfeeding problems.  Have you guessed what it is yet?  Tongue tie! (Ankyloglossia)

If you look under your tongue, you might see it is attached to the floor of your mouth with what is called a lingual frenum or frenulum.  This “string” is left over tissue from facial development and typically works its way back down the tongue during pregnancy, reducing to insignificance before birth.  Sometimes this doesn’t happen and ties can also occur on upper or lower lips, gums and cheeks.

If the string is too short, or tight and so restricts movement of the tongue, this is termed “tongue tie” (Ankyloglossia).

Milk Matters are confident identfying indicators of tongue tie.  We can provide information about moving forward either within the NHS and with the private IBCLC oral specialists we work closely alongside.  We now offer an International virtual service to help you identify signs of tongue restriction, and explore your options.

How Common Is It?

It seems to be a hot topic at the moment, but there are very good reasons for this.  Tongue tie in early infancy is more likely to be obvious in a breastfed baby; bottle teats do not complain of compression, blister if an incorrect tongue action is used, nor does bottle supply dip as a result of poor feeding action.  Even if mum finds her baby refuses the bottle or struggles with a slow flow teat, is colicky, refluxy or showing other common signs – it may never be linked to the tongue.

For decades bottle feeding was more popular than breastfeeding, and as a result many medical professionals lost their skills of diagnosing and treating tongue-tie.  This means that not only are the statistics we have likely to be misleading because they only include those diagnosed, but also that mums may have trouble finding someone who can effectively recognise and treat the problem.  A more recent study at Southampton suggested 10% of all babies born had tongue tie (Note as Ankyloglossia is genetic, this rate may vary area to area and country to country).

Tongue tie often runs in families. Some relatives may only have mild effects or no apparent symptoms while others show a severe impact on structure and function. As this strong familial tendency exists, parents may also notice a similarity to other relatives with tongue tie, especially in the older child.  The similarities observed may include postures of lips and tongue, habits of speech, and shapes of the nose and face.” (tonguetie.net)

In order to breastfeed effectively, a baby needs to have full movement of the tongue – they need to be able to create a seal will their lips and tongue to form a vacuum.  The tongue needs to cup the breast and also be able to elevate, not only to perform a correct suck/swallow pattern (without excessive air intake),  but also to undulate during feeding and create the negative pressure that = milk transfer.  They need to be able to maintain this throughout the feed to trigger subsequent milk ejections.

To bottle feed well the baby needs to make and maintain a seal and move the bolus in an organised way to the pharynx for swallowing too.  If not feeds can be extremely slow or very rapid and gulpy.  Gaps may be visible at the corners of baby’s mouth and he may leak milk (sometimes profusely), or simply intake air with each suck resulting in excessive flatulence or trapped wind.

Typical unrestricted tongue elevation Image cwgenna.com

Not all babies with tongue tie struggle with feeding, even if easily visible it may be stretchy enough to allow the baby to feed.  In this instance as the infant grows, it may not cause any further significant problems; in other cases further problems can be linked to the tie or the often resulting high palate into adulthood (as discussed later in this entry).  Similarly not all problems are tongue tie, there are other factors that can hinder a baby’s ability to suck and swallow in an organised fashion (which is why it’s important to see someone thoroughly trained in oral assessment).

Ultrasound evidence shows tongue tied infants use two different distinct sucking actions.  The nipple ends up in a different place in the baby’s mouth,  the suck is stronger, yet transfers less milk. (most resolved completely after frenulotomy)  You can read more here

Symptoms:

This is where it becomes more tricky.  Some ties are more obvious, like the tongue on the right.  Others can have a tie yet their tongue appears “normal” to the untrained eye.
Number of symptoms doesn’t necessarily indicate severity.  Some babies even with a severe restriction may display just a few symptoms, others a lot; it depends upon numerous factors.  Something that seems very common with tongue tie is the variation of feeds ie some feeds will be much better than others, it can be very up and down.
  • Persistent very sore or damaged/blistered nipples – however it’s important to note that there may be no nipple pain/trauma
  • Compressed nipples (change in shape) and/or blanching after feeding
  • Excessive weight loss or slow weight gain (may not occur if topping up)
  • Difficulty establishing breastfeeding or baby refuses to latch.
  • Excessive hunger/weight gain in baby
  • Excessive sucking need – baby wants to feed or suck very frequently/constantly.
  • Baby only swallows infrequently or swallows well for initial “milk ejection” (letdown), but then swallows become less frequent/sporadic.  In young babies this may result in falling asleep quickly at the breast.
  • Cannot maintain a seal at the breast/bottle, often has gaps at corners of mouth which milk may spill out from.
  • Mammoth feeds – or falls asleep quickly and then wakes hungry as soon as breast/bottle is removed.
  • Baby doesn’t seem satisfied after a breastfeed
  • Very frequent feeds
  • Fussing at the breast shortly into a feed or takes very short, fast feeds, baby may pull away and cry, arch back – bobbing on and off.
  • Parents may comment they can hear air being gulped, milk hitting the tummy, or baby is a very “noisy feeder” with loud swallow sounds.
  • Low milk supply
  • Mastitis/blocked ducts
  • Gagging
  • Reflux
  • Frequent hiccups
  • Colic
  • Food intolerances due to digestive disruption
  • Baby rarely/never settles to a deep restful sleep – some “catnap” and are described as very poor sleepers
  • Windy/squirmy and unsettled when sleeping.
  • Excessive flatulence
  • Green stools
  • Sucking blister on upper lip
  • Latch trouble or slipping down the nipple when feeding ie as though struggling to remain attached at times- resulting in “nipple hanging”
  • Clicking sound when feeding.  May pop on and off.
  • Disorganised suck/swallow pattern – may result in coughing/spluttering/gagging and give an appearance of oversupply.  Bottlefeeding mums may note this happens even with the slowest flow teat
  • Weak suck/poor sucking reflex
  • Oral aversion/ increased sensitivity – frequently refuses breast and/or bottles and/or spoons.  May gag frequently
  • If baby led weaning, may be very slow to start solids compared to peers, may appear keen but spit rather than swallowing food (see diary of 9 month old here)
  • If breastfeeding may refuse bottles/cups
  • Tongue tremor whilst feeding
  • Noisy breathing/snoring sounds when sleeping
  • Opens mouth to attach but doesn’t, shakes head or bobs on and off before becoming frustrated
  • Small mouth gape
  • Gape is wider horizontally than it is vertically when crying.
  • Unable to protrude tongue (some with tongue tie can, protrusion does not rule out tongue tie as the image at the top of the page highlights)
  • Excessive drooling/bubbles at the mouth
  • Displays stressed body language when feeding – hands up near face, fingers splayed.
  • Breastfeeding requires “advanced” techniques such as nipple flipping or pin point accurate positioning which mum struggles to replicate at each feed when not assisted.  Mum may feel a need to support the breast from the side to keep in baby’s mouth or he/she slips off (due to ineffective seal)
  • Restricted tongue elevation when crying.

    “Spooning” of tongue sometimes seen with tongue tie
    Image cwgenna.com

     

*may not always be the case if mum has an abundant or over supply.  Sometimes these babies will have a much larger than average weight gain, perhaps due to obtaining larger quantities of lactose (sugar) rich first milk due to being unable to effectively release fat higher up, or maybe due to frequent feeding.  These babies are more likely to slip through the system and even receive medication for the reflux/colic.  Tongue tied infants present in a wide variety of ways, often not related to severity of tie.

Is Tongue Tie Painful For Baby?

Many sources state a restricted tongue is not painful for baby.  However several tied adults have commented they experience a burning sensation when certain tongue movements are performed (depending upon where the tie is).  Is it therefore safe to assume baby feels no discomfort from this restriction?

Place and hold the tip of your tongue into the gum tissue below the lower front teeth – try to swallow, eat or talk with the tongue held in this position.  For those who cannot feel a difference or who adamantly oppose recommending frenotomies or frenectomies, I will send someone over to your office and suture your tongue to the floor of your mouth.  After one week you will understand the significance of a tight frenum! :-) (Brian Palmer DDS)

The Difficulty With Diagnosis.

Ties are often split into categories “anterior” (at the front of the tongue) or “posterior” (at the back),  in reality there are a whole host of shades of grey as the tie can be anywhere down the tongue.  Those at the front are often easily seen and treated (although not always!) whilst the ones further back may prove far more problematic when trying to obtain diagnosis.

“All tongue ties do not look alike – adding to the difficulty of spotting them. They can be thin and membranous, thick and white, short, long or wide, extending from the margin of the tongue all the way to the lower front teeth, or so short and tight that they make a web connecting the tongue to the floor of the mouth” (tonguetie.net)

They often can’t be easily seen, therefore it takes someone skilled in lactation to piece things together.  To consider breastfeeding history, observe a feed, evaluate babies tongue function and oral presentation alongside mum’s comments.  Simply peering into a baby’s mouth or just feeling under the tongue at the front, is not a reliable method of evaluation (eg you may not be able to feel a submucosal tie and tongue may appear typical)

No obvious frenulum with this sneaky tie

If they find anything unusual they will discuss their observations, and if they do not treat tongue tie themselves or perform the full oral assessment to confirm, should advise seeing someone who specialises in this field.

This can be easier said than done.

Unfortunately the number of people holding the above skills are very limited and posterior ties are regularly missed by Paediatricians, Midwives, ENT (ear, nose and throat) Consultants, Breastfeeding Counsellors, Health Visitors and sadly even some Lactation Consultants (IBCLC) and/or Infant Feeding Advisors (read one mum’s experience here).   Some only recognise a tie at the front of the tongue and state baby is not tied if they can’t easily see the frenulum, some might even tell parents posterior tongue ties don’t exist!  Despite the fact that evidence highlights posterior tongue tie is a problem poorly recognised in the community.

Discussing ties with several pediatricians and ENT specialists – it seems many do not receive specific tongue tie education during training (I’m not sure whether any do?)

Therefore if any of the above state they suspect a tongue tie, or you have problems nobody else can seem to help resolve – it is worth seeking out someone who states clearly they specialise in this field.   Regardless of how you feed your baby, you can still contact many IBCLC tongue tie specialists for help.

What makes diagnosis even more difficult is that other things can impact on oral function beyond tongue tie.  As the nerves that control the tongue and jaw run through the head and neck, compression can inhibit the jaw and tongue movement.  This may be from positioning in the womb, a long first stage or a difficult or traumatic delivery – resulting in the infant displaying similar symptoms to those described above.

In addition other oral differences can occur with a tie, or as a result of birth or genetics; these include a bubble, narrow or high palate, or a lip tie.  All are more common in a baby with tongue tie – the tongue smooths to help shape the palate inutero, and repeated incorrect pressure once born can also impact on the oral cavity.  This mean the palate can often give important clues as to what else may be going on!  However it should also be noted a high arched palate can also be found without a tie, and a tie can be found with a palate that appears typical – see why it really takes someone specialising in this field?

What other problems can an undiagnosed or untreated tongue tie cause.

As discussed above not all ties need intervention to breastfeed, however parents should be aware that a tongue tie can impact in other areas at a later stage – when treating is a much bigger procedure.

  • Ongoing colic/wind/reflux or unsettled sleep patterns
  • Eating difficulties – as the tongue requires a full action to process food, infants with tongue restriction may refuse spoons, gag/choke easily, or refuse to move on from runny foods.   Some may be classified anywhere from “picky eaters” to “food phobic” depending upon severity.
  • Dribbling/drooling – which may be prolonged and into childhood.
  • Dental problems which may be severe and wide ranging due to the palate.
  • Speech may be unclear due to several aspects, especially coordination
  • Ongoing acid reflux/indigestion
  • Snoring
  • Sleep Apnoea
  • Tongue tie can also prevent the tongue from contacting the front of the palate. This can then promote an infantile swallow and hamper the progression to an adult-like swallow which can result in an open bite deformity.
  • It can also result in mandibular prognathism; this happens when the tongue contacts the anterior portion of the jaw with exaggerated thrusts.

The specific challenges an adult with a tongue tie may face include:

  • Clicky jaws
  • Pain in the jaws
  • Migraine
  • Protrusion of the lower jaws
  • Burning sensation when elevating tongue
  • Effects on social situations, eating out, kissing, relationships, appearance
  • Dental health: a tendency to have inflamed gums, and increased need for fillings and extractions .  The high or bubble palate also changes the shape of the oral cavity, which can result in hindered dental development, ill fitting teeth or too many to fit the space (ie if palate is high it will naturally make it narrower), overbite/underbite, or tongue thrust (the tongue protrudes forwards when at rest impacting on teeth)
  • Acid reflux/indigestion/bloating/gas from incorrect chew/swallow mechanism and sucking in of air.
  • Snoring
  • Sleep Apoena

For further information and details of other potential implications, please visit BrianPalmer DDS.

Treatment

“Up to the year 1940, tongue ties were routinely cut to help feeding. When this changed – because of a fear of excessive/unnecessary surgery and a reduction in the practice of breastfeeding – the belief that tongue tie was not a “real” medical problem but an idea held by over-zealous parents became widespread.”

“Early intervention is ideal since it avoids habit formation and the negative effects of failure: whether it is due to messy or slow eating, funny looking teeth or speech problems. When there are no strong habits to eradicate there is a better chance of success in correcting the difficulties that poor tongue mobility has caused.

“Once a tongue tie has been diagnosed, the primary need is to correct the structural anomaly causing the problem. After the structural problem has been successfully corrected, it is reasonable to expect to improve function, and to treat secondary problems successfully. The type of treatment that is most appropriate depends on the problems that have been experienced.” (tonguetie.net)

Treatment is often called: snipping, dividing or clipping which describe a “frenulotomy”.  A pair of blunt ended sterilised scissors are used to simply snip into the frenulum (which has few nerve endings and blood vessels) before the mum puts baby immediately to the breast.  Some studies have noted a sleeping baby may not even wake during the procedure; in one study 3 out of 36 babies continued sleeping, and in another the figure was 39 out of 215 (NICE Division of ankyloglossia (tongue-tie) for breastfeeding).  Some parents note their child cried at being held for a moment to allow access, but that this crying did not increase in intensity when the frenulum was clipped.  NHS guidance suggests an average crying time of 15 seconds (Bath and North East Somerse, Tongue tie information for parents).

Feeding immediately after the procedure is not only soothing, swooshing the area with the antibacterial and anti inflammatory properties of breastmilk, but also allows baby to try out their new tongue action which would be hindered if the area was numb from anaesthetic.

“Although division in the outpatient clinic can still be done in many older children, general anesthesia may be required in some patients.  Division of tongue-tie is a simple, easy and safe procedure. Early and aggressive treatment is recommended. It is best managed without anesthesia  during infancy before teething at the outpatient clinic.  Delayed treatment may put some children under the risk of general anesthesia.”  (Outpatient division of tongue-tie without anesthesia in infants and children, Ming-Lun Yeh, World Journal of Pediatrics)

Other oral specialists agree:

“Based on 30 years of clinical observation I have sufficient documentation to state that:

• Frenulums do not go away by themselves.

• Frenulums can have significant consequences on oral cavity development and total health.

• Side effects are minimal, benefits are significant.

Challenges:

• #1 reason surgery is not performed – fear of litigation.

• Procedures not taught in medical or dental schools.

• Myths / misinformation abound on the topic. Breastfeeding and Frenulums Brian Palmer, DDS.

Are there risks to Frenulotomy?

It is estimated the risk of infection is 1 in 10,000 infants.  Saliva contains some antibacterial properties, and breastmilk also has many antibacterial and healing characteristics.  As a small amount of localised bleeding may occur, babies with any blood clotting disorders may be at increased risk.

Baby may become fussy, or mum may not note an improvement for 24-48 hours post frenulotomy.

NICE guidelines state:

“You may have been offered the tongue-tie procedure for your baby.  NICE has decided that the procedure is safe enough and appears to work well enough for use in the NHS.” Division of ankyloglossia (tongue-tie) for breastfeeding

Hogan et al 2005 found:

“Overall, division of the frenulum in the babies resulted in improved feeding in 54 out of 57 babies (95%). There were no problems with infection or bleeding, either primary or secondary. Most babies cried for only a few seconds until they were given a feed. The author concluded that division was safe and significantly improved feeding for mother and baby and division was significantly better than the intensive, skilled, professional support of the lactation consultant.”

Dollberg et al (2006):

“The authors reported a significant decrease in pain score after frenotomy than after sham and significant improvement in latch score after frenotomy. No significant side effects of the frenotomy were observed in any of the patients and bleeding (a few drops) was controlled within seconds in all cases. The authors conclude that frenotomy appears to alleviate nipple pain immediately after frenotomy and that it is effective in treating breastfeeding difficulties.

Griffiths (2004):

The authors reported that 80% were feeding better by maternal assessment at 24 hours, 57% noticed a difference immediately, 95% could poke out their tongues at 3 months. No anaesthetic or analgesic was used and there were no reports of significant complications.”

Amir et al (2005)

“After the tongue-tie release, 83% of mothers reported improvement in breastfeeding. Parents reported high levels of satisfaction with the frenotomy procedure and no complications were reported.”

Ballard et al. (2002):

“Latch improved in all cases, and maternal nipple pain levels fell significantly after the procedure:  There were no  complications related to the procedure.”

Based on the research, a critical review entitled, ” The effectiveness of frenotomy in the treatment of breastfeeding difficulties in infants with ankyloglossia” concluded:

“The studies collectively provide significant evidence for the effectiveness of frenotomy in the treatment of breastfeeding difficulties in infants with ankyloglossia. Therefore, it is recommended that frenotomy be considered an effective approach to treatment of breastfeeding difficulties in infants with ankyloglossia.”

One mum’s experience of tongue tie and frenulotomy.

“From day one I’d experienced pain on feeding with increasing nipple trauma. Holly also suffered poor weight gain with signs of wind and reflux including really bad hiccups. Other signs were her breathing, snoring and ineffective feeding.

We experienced an 8 week long battle to get Holly’s tongue tie recognised and addressed. Charlotte from Milk Matters identified the problem when Holly was 2 weeks old, but we were told repeatedly by numerous health professionals that there was no tongue tie; these included our GP, Health Visitors, Hospital based Lactation Consultants, Midwives and even the Tongue Tie clinic at Oldham who turned us away.  Charlotte continued to act as our advocate and support over the telephone, finally getting us access to a private Lactation Consultant in London who was visiting Leeds.”

You can read our full story here:

Snipping the tie…

“Ann came to assess Holly at home and stayed with us 2 1/2 hours. She undertook a really thorough assessment taking an extensive history of our feeding experiences and an intensive physical assessment of Holly’s mouth and sucking pattern. She confirmed a diagnosis of posterior tongue tie and recommended the procedure to have it snipped. We were really nervous as the thought of doing anything to hurt Holly was awful.   Ann took us through the procedure in great detail though and we quickly felt reassured. By the time we were ready to start Holly was pretty hungry so she was crying before the snip was done. I didn’t actually watch the snip but stayed near to Holly but as I wanted her to be able to hear my voice for reassurance. She was wrapped in a blanket to swaddle her and keep her still and it seemed to be over in a couple of seconds. Ann placed a piece of gauze on the site to stem some bleeding – it wasn’t bad at all though and quickly stopped. After the gauze was removed we quickly put Holly to the breast and she started feeding straight away with a really good latch. We got to keep the scissors used for the procedure – a pair of sterilized blunt scissors that didn’t look too horrendous. Ann stayed with us for a while after the snip to assess feeding and gave us great advice on positioning and feeding technique to suit Holly’s newly released tongue! Holly was fine after the procedure and the immediate difference in her tongue movements was amazing to see.

Ann did a follow up visit a week later to check that the procedure had worked effectively – with a posterior tie there is a risk that the site can heal down again. We had been given exercises to do with Holly to develop tongue movement and these were great to incorporate into her daily routine. Ann checked feeding positioning again and gave further advice regarding removal of the formula top ups and longer term feeding.

The idea of the procedure isn’t nice but we stayed focused on the reasons for having it done and we would recommend it to anyone that’s been having difficulties due to a tongue tie. It was so great to have the procedure done in the comfort of our own home which I’m sure added to Holly’s well being.

It’s so exciting to be exclusively breastfeed now and see Holly feeding effectively and thriving. I’m nearly pain free on feeding now – I’m just waiting for my nipples to fully heal but can see improvements every day.”

Comments

  1. Hi,
    my son had what i believe was an anterior tie snipped at 2weeks old, it wasnt diagnosed til i spotted it myself on day3 whilst still in hospital as he refused to latch on, obviously he couldnt! i fed him for the first 2 weeks using nipple shields as this was the only way he could latch. he was syringe fed untill the tie was diagnosed, we had originally put the reluctancy to feed down to birth trauma, he was born by keilands forceps after induction and a very large epidural in theatre. he was exceptionally sleepy from birth, born at 11.30, first ‘feed’ ~(1ml expressed milk) at midnight, then nothing until 9am as he slept the entire time, wasnt encouraged to feed hiim, he never cried for food, never looked for food, never rooted.

    noticed an imprvement almost immediately and were shield free straight away! we are still exclsively breast fed at 14weeks, but i wonder if there are still issues. his latch isnt perfect, i do still get sore. he snores louder than his dad, and when awake has a tendency to sound like darth vader! he sleeps well on a night. but when feeding he comes on and off the nipple frequently, and often the only way he will latch is if i squash my breast and put it in his mouth. he regularly coughs and splutters whilst feeding, but its generaly after let down, and when he comes off the boob to recover we generally end up covered in milk as its squirting out of its own accord. he gulps his feeds as though hes been starved and can hear milk hitting his tummy.

    having looked at his lips, i think he does have an upper lip tie as the frenelum there comes all the way down his gum, and even appears to go arond the gum, though hubby says this is his family trait and will lead to a pronounced gap between the front teeth like he has. the tongue tie actualy runs in my family though.

    am thinking i might get him checked again as i would much rather get any problems sorted sooner rather than later!

    his tie was snipped by the consultant plastic surgeons assistant at the RVI in newcastle. our midwife in hospital only gave us the referall for the appointment as he was refusing to breastfeed and i was refusing to give formula, i expressed up to 1ml of milk every 3hours until he was 70hours old. he did get 10ml of formula at 60hours old, this did help give him just enough energy to continue and bring up an awful lot of mucous still in his stomach from birth.
    the midwife said, if there werent any major problems with feeding, we wouldnt be recommended to have the tie snipped as it may create problems!

    think ive waffled on enough now!!

    • I would highly recommend having it checked again. My daughter had posterior tongue-tie. She was originally diagnosed and clipped at 6 days. We had some minor improvement, but not much. I pumped and bottle fed her for 4 months. Then finally had her re-evaluated and re-clipped at 16 weeks. Amazing results! She has been breast feeding exclusively and is now 8 months. The research we read shows that about 23% of the time a re-clipping is necessary.

      • My experience, exactly, Kim. I pumped exclusively for 4 months. Son had posterior tongue tie and was clipped at 8 weeks. No improvement whatsoever. Continued to pump and give bottles of breastmilk until he was clipped again at 4 months old. The second time was and ENT who used an eye cautery to get every bit of lingual frenulum out. About 24 hours after the 2nd frenotomy, he was breastfeeding exclusively at the breast and has not had a bottle since. He is 2 years old now and STILL loves to nurse!

  2. Cylie has anyone performed a full oral asessment including re residual compression etc? You are welcome to give us a shout on the helpline and we can help hook you up with someone in your area x

  3. no, never been given a full oral assesment, even at the hospital before the snip, she just confirmed that the anterior one was there and that she would snip it, and that was just a cursory glance.

    whats the helpline details and i will definitely give you guys a ring!

    • Cylie are you UK? If so the number is on front page. If not let us know roughly where you are and I will go through my contacts to see if I can find someone who could help x

  4. My son was born after a 3 hour precip labor, and nursed for the first hour after birth. He did not seem to have any major latch issues other than the tendency to suck his lips in while nursing. I had sore nipples for about a week, and then they felt normal.

    Despite this, I had a weird disconnect with breastfeeding him. It didn’t seem to trigger the oxytocin rush that I remembered from my first son. I attributed it to the fact that he did not seem to like comfort nursing and preferred a pacifier.

    My son developed reflux issues around 2 months old when we introduced vitamin drops and started having very mediocre weight gain. At this time someone suggested that he appeared to be tongue tied. The pediatrician stated that it was a “very minor” tongue tie and it would not create feeding issues to the point of weight loss, particularly since my son had EXCELLENT gain in the beginning. (He was born in the 40-something percentile and spent the first 2-3 months in the 78th percentile which was very unusual to me because my older son was tall and thin with weights in the 25th) My pediatrician pointed to MY weight and suggested that because I had lost so much weight, that maybe my milk did not contain enough calories, and he suggested that I try to gain weight by “eating a lot of pizza”. (Yeah..) So I started doing my old weight gain tricks where I would eat 6 avocados in a day, a can of olives, put oil in my food, and eat whipped heavy cream by the pint-full. I gained 3lbs. My son lost an ounce in.. I believe it was either 2-3 weeks or a month.

    I asked for a referral to an ENT that could clip the tongue tie. When I called to make an appointment I was informed that my son would need general anesthesia. He was under 15lbs, I was not comfortable with this as my pediatrician had assured me that it was a minor tie. I also knew that there were people that would clip ties with a local. I kept looking and looking but wasn’t finding anyone.

    At this point my son was making up to 21 wet diapers per day. We actually switched to cloth diapers because of this. I also pumped milk and when it separated it was easily 1/3rd fat.

    My son’s diaper production slowed a bit, but he was still wetting far more diapers than is considered necessary to indicate good production. He had no symptoms of dehydration. He had no symptoms of failure to thrive other than the weight issue. He was meeting milestones faster than my older son had met milestones.

    He had developed the habit of screaming like his leg was being eaten by rabid dogs whenever he farted. His grandma suggested maybe it was gas and told us about a trick she had used where she would oil a q-tip and put it just inside of the anus to release gas. We tried this and the q-tip came out yellow with poop. We realized quickly that it was not gas, he was screaming because his poop was burning him.

    My pediatrician had been pushing for him to get solids since he was 4months old. My older son had lost weight on solids so I was hesitant. At just over 5 months I introduced some solids. We also bought an infant scale.

    On solids my son stopped pooping completely. He’d eat, gain a bit of weight, then poop and lose enough weight that he weighed less than before the solids. He was losing body mass. He was still meeting milestones but was starting to look very thin. He was also starting to just act and look weird and become very fussy and colicky.

    We stopped solids, we stopped vitamin drops. He started gaining weight again, just very slowly. About 2-3oz per month. The acid poop went away completely.

    My breastfeeding friendly friends said he seemed fine and maybe he was just a slow gainer. My non-breastfeeding friendly friends suggested formula. At this point the thought was that he had food sensitivities to something in my diet. I eliminated dairy and played with the idea of eliminating gluten.

    I pumped and tried bottle feeding him after he had nursed. He’d drink an ounce, then spit up two.

    We went to a pediatric GI expecting them to run some tests. Instead they sent me to a nutritionist who told me to add oil to his food. They did some bloodwork that indicated he was borderline anemic and had low levels of vitamin D (despite my having given him vitamin D all along even after eliminating the other vitamins)

    We re-started solids and added oil to his food. He had a brief period of gain followed by the same pattern of loss. If he ate solids, he would eat less breastmilk. The amount of food in ounces that he ate would remain consistent.

    My son’s tongue looked WRONG. It looked bunched up. It would “creep” out of his mouth when he tried to stick it out, like one side of it would come out at the midline and the other side would get drawn back into his mouth. When he cried all you saw was frenulum. The tongue would pull back into his mouth and go flat. When he sucked on my finger his tongue wouldn’t “cup” my finger the way I remembered my older son’s tongue cupping my finger.

    A friend suggested a posterior tongue tie. This ended up being the bit of information that set me in the right direction. It was NOT a posterior tie, but looking for an ENT that was familiar with posterior ties was what resulted in him seeing someone with enough knowledge and skill to clip his tie.

    While looking for someone who could clip a tie I was told about a Dr. Coryllos. Dr. Corrylos no longer practiced. But when I went searching for her information I came across a thread on mothering.com that talked about posterior ties and who could clip them. Someone suggested a “Dr. Dahl” in New York City as an alternative for Coryllos who no longer practiced.

    I called. I made an appointment. I went to the office. She clipped his tie right there with a topical anesthetic. He latched on and nursed NORMALLY for the first time since he had been born. Having only ever nursed my older son and having last nursed him when I was 3 months pregnant with my younger son.. I thought “all babies are different”. And sure, all babies are different. But.. Wow. I can’t even quantify the difference. He nursed NORMALLY. He sucked normally. I felt that oxytocin rush that was missing. I felt the letdown which I hadn’t felt since I had been engorged with oversupply in the early months. (I seldom felt letdown with my older son and thought it was just something I’d feel when engorged.)

    He gained 2lbs in 5 weeks. He pulled out of the failure to thrive 5th percentile and is working his way up. He can now drink out of a bottle if he needs to. He can now eat solids with texture and swallow them. He no longer has reflux symptoms. He is a completely different baby. He’s abandoned the pacifier that he clung to for the first 8 months of life and now is a boobie baby that loves to comfort nurse.

    All because a “minor” tie. UGH!

    • Wow thank you so much and well done for hounding those doctors and getting it sorted. My son has a tounge tie again described as a mild tounge tie and shares a lot of the same habits mentioned in the report and by your own experience with your younger son. I peas livid when my local hospital lost my child’s red top referral to the ENT consultant and after chasing and finally getting another appointment we were told that as he is over 3 months theycould only do this under a GA which I really didn’t want to subject him too. ENT consultant has ensured me it is only mild. My son has always been a poor sleeper and eater. Was always on the boob and cried when I took him off after he fell asleep. He was jaundice due to a slow latch and a struggle with establishing breast feeding and is still following the 9th pencitile for his weight with a few dips at 18 months. I am very angry and feel let down by the ENT team, I had to push to get that referral from my GP when my son was 4 weeks old. He is my first child so I couldn’t compare but I know I have never really felt a let down. I still feed my son now, I do worry about his speech and the fact he is such a poor eater. He can’t get his tounge pass his bottom lip and the rest of the tounge gets pushed out the sides with his little heart shaped in the middle. It is sad poor little might.
      It has been really interesting and amazing reading how people have persevered and found ways to cope here.
      My son can have a local if he wishes when he is older enough to consent……yeah cheers for that in the mean time he can struggle on all because they lost his ENT referral!!! Yes I have a massive chip on my shoulders over that one!

  5. Sara thank you SO much for taking time to share your story in such detail. It’s actually amazingly helpful and I find the point about oxytocin release fascinating and that’s started a whole new train of thought for me!

    The “too minor to impact” is something that drives me crazy and you are a prime example of why a FULL evaluation of feeding, oral cavity etc is SO important – not just what the tie visually looks like.

    I’m really glad you got sorted in the end and now have a happy healthy baby x

    • Just an update.. :) Loki is now 11 months old. His tie was clipped around 8mos, as I mentioned. He just had a pedi appointment and his growth chart is interesting. From birth to 2 or 3mos he gains rapidly, going from in the 40’s to 70’s percentile wise, then he slowly falls off to around the 5th percentile around 6-7mos, maintains at 5th percentile until 8mos (tie clipped) and is now around the 30th percentile and gaining.

      All his food issues are gone. He chews, swallows, etc. He can eat from a bottle if he needs to, suck a straw, etc. He nurses for comfort still.. He is playing catch up and has a ravenous appetite now that he can eat without it being difficult for him. (Both at breast and w/ solids).

      If I had followed his doctor’s path of suggestions he would likely be on hypoallergenic formula, choking o. It, food avoidant (which he was until 3 days after the tie clipping).. And would be on reflux meds. Poor critter. Instead he is rapidly regaining lost ground and will likely breastfeed until at least the 2 year minimum of the World Health Organization.

      • Michelle says:

        Hi Sara
        Your story is as if you’ve lived my life for the last 5 months, right from the precipitous (2.5 hour) labour through to the slow weight gain, refusal of solids, straining when trying to poo, passing lots of urine and getting the professionals to listen … pretty much everything. At 20 weeks my son has just had his posterior tongue tie snipped, but as yet there is little change in his feeding and he still swallows lots of air and is very gassy and fussy. I’m going back to ENT today just incase there is more to snip and if not, they are going to refer me to another gastro and SLT team to look at his sucking and swallowing, and bowel habits further. I’ve been on dairy and soy exclusion diet for 14 weeks now and can’t say I’ve noticed much improvement but I’m too nervous to go back on to dairy in case it makes the gas etc worse! We stopped all reflux meds as it was near on impossible to get him to take anything without him choking on it. I figured better to have some acid (about which I was not convinced) than develop even more negative assoications with his mouth and what goes in it. As for a bottle – still no joy – he seems to have no idea what to do with it and either gags or chews the bottle – I’ve spent nearly £80 on different teats etc…. How soon should I notice a change in sucking and feeds in general? He currently wakes (seemingly in pain and trying to ‘push one out’ but probably starving too!) every 1.5-2hours in the night. I’m EXHAUSTED and I have another son who has only just turned two who is being very neglected :-(

        • Michelle did you get lactation support with the division? When was it done? Feel free to give me a shout on the helpline, it sounds as though there is potentially more going on – perhaps retained compression from labour and gut disturbance.

          • Michelle says:

            Hi Charlie – no – just ENT… I have taken him to cranio – osteopathy too. Will give you a shout in a sec. Baby’s just been sick witth some blood in it hopefukly only from the procedure!!!

          • Hiya – yes normal if baby has swallowed a little blood for it to show in vomit. Just collected your message will give you a shout shortly :)

        • Michelle says:

          OK – I’ve just come back from ENT consultant who has clipped the posterior tie again as there was clearly more to do, and she clipped his top lip frenulum too (at my request) so let’s wait and see… ;-@
          So pleased I found this website to know I’m not alone!

        • Michelle who clipped your LO’s lip and tongue tie?. My baby had her tongue-tie clipped and I think it has reattached. I also realized she has a lip-tie as well.

          • Michelle says:

            Hi Jeannie
            An ENT consultant called Helen Caulfield and she was superb. Although he’s a little older than they would normally clip in the tongue tie clinic she did it without anasthetic, and she did the top lip too. This week we went back because I thought it might have reattached and I was right – there was a thick stem still and we have now had it clipped 3 times. I believe (and hope) that we will not need to go back but sadly his feeding hasnt changed that much.
            Hey ho!

          • Hi
            If it has been done 3 times, is it definitely getting properly divided ie is there an improvement after the division that then declines again as it heals back?

        • Well, your body adjusts to meteing the needs of your child, so if your child sleeps 10 hours, it means she doesn’t need the food, so your body will produce less at that time. When she wakes, she may need more, and she’ll get it at that time. Your supply won’t go down it’ll adjust to what your child needs.

  6. This is a great post thank you. I only wish this info had been more availabl when I struggled with ly little boy. Our story is here if anyone is interested
    http://different-choices.blogspot.com/2010/06/seeking-closure.html
    There is a positive to our difficult journey though in that our experience led me to beme a volunteer breastfeeding group supporter for several years before ultimately getting a job within the NHS as a BF peer support worker. There is still such a lot of uncertainty about tongue tie even now. Some of the staff I work with are great and know to look for TT immediately, whereas others see it as the new unnecessary trend believing that TT is overdiagnosed. They seem to miss the point that you made right at the beginning, that socity lost the art of BF and subsequently stopped looking for TT as an issue alongside the actual dcrease in numbers actually initiating BF. The one thing I am thankful for is that my own awful experience means that I know the signs and symptoms of TT and within my role can judge for myself and get mum the help she needs as soon as possible.
    BTW – my son is still BF occasionally despite our bad start although at 4 years and 8 months I don’t think he will for much longer…….xx

  7. This article is very interesting to me. I have a 6 month old baby who has a quite severe tongue-tie. I wanted him to have it snipped while he was very young but the consultant I saw said he would not operate on babies under 12 months as a general anaesthetic is required. I asked my GP for a second opinion but they would not refer me to another consultant. As my baby was gaining weight and I was not in any pain I agreed to this. However I am now in agony :-( I have blebs on one of my nipples which the infant feeding specialist I saw last week said was probably due to the tongue-tie. I have also now found out that a different consultant at the same hospital would have done the operation when he was a tiny baby. This is frustrating, but now I’m wondering if my baby would benefit from the operation now – although I realise it would now need anaesthetic. I would not want to put him at any unnecessary risk, but would rather not have to move on to formula milk.

  8. Hi Laura
    If private is an option you could probably get that done – most do not feel the frenulum is thick enough to need anaesthetic until a bit older 10-12 months plus. Also if you have been told it’s insignificant, it would suggest it appears small (and so potentially an easier one to treat) – although some are deceptive when you have a closer look!
    You can always give us a call on the helpline if you would like us to try and locate someone to help – we don’t charge for phone support :)

  9. Thank you for posting on such an important topic. I am a lactation consultant in private practice and over 60% of the babies I see have tongue tie, many of which went undiagnosed for quite some time before they came into my practice. Increasing awareness about this topic is critical. So many breastfeeding relationships end prematurely due to tongue tie being missed. Keep up the great work!

    • You can give the baby canned “wet” cat food, or dry cat food that has been mixed with water until it is soggy NO milk podtucrs he can’t digest them. It would be best for the bird to get it to a rehab center; cop or not, it IS illegal to have the bird, as songbirds are protected species. You can contact a zoo or vet to get a list of rehab workers in your area; they are very good with dealing with abandoned and injured birds, and your little baby robin will have a much better chance of surviving until maturity in their hands.

  10. Thank you for this. It is the most thorough article I’ve seen on the subject. I see tons of TT’s with my clients and often peds disagree with my assessment. I’ll be pass on this article, for sure. As well as sharing it on my facebook page. Thank you!

    Renee Beebe, M.Ed., IBCLC
    Private Practice Lactation Consultant
    Seattle, Wa

  11. Thanks Charlie. Strangely one thing everyone agrees on is that my baby’s tie is quite severe with a thick frenulum. I’m going to give it a few days and if the blebs clear up then I guess just leave it until he is 12 months. The consultant that would not treat babies under 12 months said it was because it may cause excessive bleeding. Even if this is not strictly true he has frightened me into submission!

    BTW my GP (registrar) originally told me that tongue-tie is a cosmetic issue and they do not consider it a medical condition. Your article backs up my own opinion that it is not very strongly – so thank you for that too.

  12. Sorry Laura I was getting you mixed up – long day lol
    Under 12 months excessive bleeding? Do you have clotting problems in the family or suchlike?
    I would guess the risks of bleeding are significantly less than the risks of anaesthetic?

    Thanks all :)

  13. Thank you so much for this article. Also thanks to Sara for sharing the details of her story.

    On this list, I recognise so many of the problems my son and I have learned to work around in our breastfeeding relationship. He is now nearly two and still breastfeeds like a newborn.

    The bobbing on and off and failure to latch that you describe is exactly how he was in his first day or two, before he started doing hour long feeds in the first few days. He always had a really noisy swallow – which I thought was normal till the leaders at a support group commented on it – and had a milk blister for months. He often seemed to struggle with my fast flow, would fuss at the breast and was a very windy baby. I have often wondered if he had reflux.

    From his birth weight at around the 75th centile, his weight shot up into the top centile and for several months he put on over a pound a week, so there was no concern about him. He has always had a lazy latch, with a tendency to slip down the nipple, and has never seemed to be able to open his mouth wide. I have had compressed, sometimes blanched, nipples after most feeds, and bouts of extreme nipple soreness. He has a strong tendency to turn in his upper lip, and I have to turn it out for him on most feeds. I had frequent blocked ducts in the early days, and had a couple of bouts of mastitis when he was about a year old.

    But all of the above could be helped by doing the exaggerated latch technique, which we had to do for months to avoid nipple bleeding and blisters. The one thing that I couldn’t seem to fix was that I never felt the oxytocin rush that other women have described. I assumed that this was because the function was somehow weaker in me than in other people – until reading Sara’s account above and realising that this is perhaps another symptom. Chatting to a breastfeeding counsellor the other day, I commented that I had never particularly enjoyed breastfeeding, or certainly not till my son was quite old and we had an established relationship. When she looked surprised and a bit disconcerted, I realised this wasn’t normal!

    Today, I checked my son’s mouth while he was asleep and discovered that the frenulum of his top lip connects all the way down to just above his teeth, and is quite tight. I don’t know if it’s worth finding someone to check for a tongue tie as well, now that he’s this old. Certainly if I have another baby I would want to seek help immediately to avoid these difficulties a second time round.

    At any rate, thank you so much for posting this. It’s been a bit of a rollercoaster for me – I wish I’d had this information when my son was much younger.

  14. Wow, i’m so glad my lactation consultant gave me this site. My LO is 7 days old today. The first latch after he was born DID hurt. I thought it was norm though…..i had a hard time getting him to latch on. i thought it was me at first. throughout the night the nipple pain increased and it looked like LO was denying my breast out of frustration. i ended up breaking down and crying…i felt so hopeless. the next day we had a follow up visit with our midwife. she said he was latching fine but i told her it still hurt. she said it would take a few days and gave me some nipple cooling pads and lasinoh. the nipple pain was getting excruciating to a point where i was NOT looking forward to feeding my LO. this made me fee terrible. i ended up breaking down AGAIN. that was enough. we ended up calling a lactation consultant. she checked our the nursing session, him, me, and came to the conclusion that he might be tongue tied and/or his jaw is out of alignment. she states that fast labor babies can have probs nursing. because of the jaw out of alignment we would have to take him to a chiropractor or get craniosacral therapy. there was no way i could feed him anymore from my breast. the consultant said he gnawed my left nipple flat and left a wound. that’s not a good sign. she referred us to a specialist to get the tongue tied evaulated and have it done. we have to wait till this monday to see her. so…we were given a supplemental nursing feeder and attached it to our finger to finger feed him. so it was feeding him this way and pumpin my milk. the finger feeder worked only for A day. sadly, we decided to feed him breast milk with a bottle….that’s where im at now. i’ve been reading/researching all about tongue tie since we found out about it…. tomorrow is our appointment. i hope this will fix our problem. i feel like i’m losing bonding experience with my LO.

  15. Great to see this informative and important post. Every baby should be evaluated for tongue mobility at birth. If both midwives and doctors could learn to identify both occult and overt tongue tethering, early recognition and correction would save an enormous amount of pain and suffering for women. Short and long term problems for babies would be averted.

  16. Thank you so much for this article, and for all the stories of mum’s fighting for their babies, how inspiring!

    My daughter is 16 months old now and I stopped breastfeeding her when she was 12 months old – looking back I don’t know how I managed for so long, literally every feed up to 12 months hurt (although nowhere near as badly as the first 3 months, so I persevered).

    Just after her birth my midwife diagnosed a tongue-tie, however the paediatrician who did the full assessment the next day said they don’t do anything about them now until they become two years old, and only if it causes a speech impediment. If I’d known then what I know now I would have challenged this and asked for an ENT referral.

    My daughter slowly gained weight and remained on the 5th centile ever since. She has the ‘heart-shaped’ tongue and has never been able to properly stick it out. She’s always made ‘clicky’ noises when feeding and after feeding would vomit large quantities of the milk.
    I had mastitis 3 times, my right breast never really recovered from this, and I still get pain in it.
    I also got blisters on my nipples, which were always white as if they had no blood in them after feeds (obviously I realise now from ‘compression feeding’). I remained engorged for the first 6 weeks, although I see this as a blessing as I was obvioulsy naturally over-producing milk, however she wasn’t getting the proper ‘let-down’, but somewhere in the the middle she managed to get just enough to not go below the 5th centile.

    The two GPs and HV that we have approached about it have all said that they don’t believe an ENT referral necessary. Her front teeth came through at 10 months and at this point due to a wide gap between the top two we noticed that she also has an upper frenulum that comes right the way down to her gum-line. We decided to take another trip to the GP as we thought that if we intervene fairly promptly we may be able to prevent unecessary orthodontic work later when the adult teeth come through, however the GP said that they would just correct that later down the line when it becomes a problem (whatever happened to prevention is better than cure?!)

    After reading this article it has given me the confidence to return yet again and ask for another referral. Interestingly, my husband has a clicky jaw, and had to have extensive orthodontic work including 6 tooth extactions, and also snores in his sleep, so I am now wondering if he has the same and if my daughter’s is genetic.

    As I’m no longer BF I’m not very hopeful of getting anywhere with the GP, but I just really don’t want her to get permanent issues, i.e. with her lower jaw or a high palate. She’s always had fairly laboured breathing – ok through her nose but noisey through her mouth – and snores in her sleep.

    How annoying that this appears to be because of the loss of BF – formula has a lot to answer for!! As a nearly qualified student midwife I always assess the frenulum at birth now, however this is not a routine midwife’s assessment at birth, we assess that the baby has a full palate but that is all with regards the mouth, this is in my unit anyway, I can’t speak for others.

    Thank you again for all the inspiring stories :) good luck to all mummys trying to get their babes treated, we are not ‘over zealous’ we just want the best for our children.

  17. Carolyn says:

    I have a 13-week old little boy who has had problems with feeding since birth, and I’m now wondering if it could be tongue-tie? He displays almost all of the symptoms you’ve listed; the biggest problem for me has been that he just won’t open his mouth, so we’ve never had a latch. He was in hospital and ng fed for the first 7 weeks of his life cos we couldn’t get anything in him to feed him any other way! He also suffered from sleep apnoea for the first couple of weeks. He’s on gaviscon, domperidone and omeprazole because of his apparent reflux, and he has to be the windiest baby I’ve ever known – not that I’ve known many, and he’s my first… he’s now bottle fed with ebm because he still won’t open his mouth far enough to latch. He gags and splutters while being fed, but then carries on gulping noisily as if he’s not getting enough milk. He is very rattly all the time, snores loudly (his chest is clear though) and really noisy when he’s feeding – you can definitely hear it when he swallows – almost everyone comments on it. He was 6lb 2oz at birth, buut dropped almost a pound in the first few weeks, finally regaining his birth weight after about 4 weeks. He’s still only 9lb 9oz now, and not really putting on enough weight.
    Help????
    I just left a message on the MM phone… would love to know what you think and possibly get to the bottom of what’s going on here. My ultimate aim would be to have him take a feed from me rather than a bottle… but for now I’d just like to find out if he IS tongue-tied.

  18. Hi Carolyn
    I just realised when I spoke to you I totally forgot to get your email address – could you email me with it please? charlotte@

  19. Thank you for this article. My daughter is displaying all but 8 of your (huge!) list of symptoms and yet has no visible frenulum and can protrude her tongue quite well. Luckily I have a very good HV who has referred me to the hospital anyway as it really does seem to be tongue tie.

    I have had 2 midwives and a GP dismiss me when I ask them if it’s tongue tie as she has no visible frenulum but the symptoms have been getting more and more and I just wasn’t convinced that they were right; it’s articles like this that reassure me that I’m not making a fuss out of nothing.

  20. Wow! Thank-you so much for this article. I have been dealing with digestive issues with my daughter (now 11 weeks). She also has congestion on and off. She has been on supplements, herbs, medication, you name it! I even took Diflucan for a week thinking we both had thrush so bad that it was causing her issues. Nothing has helped. Then, a few days ago, I took her to a lactation consultant, and she recognized right away that both her anterior and posterior frenulums were tight and she had a bubble palate. We have an appointment next week with an ENT who specializes in these matters. I am going to share this link with our family doctor!

  21. saja randika says:

    HI im 21 years old and i have the tongue tie , i have speak problems and funny teeth and lot other stuff that mention in this site, so I’m gonna get an operation, will i be normal like will i talk properly ?

  22. Wow, I am reading this, and getting a terrible feeling in my gut. Although our son has nursed well, and gained very quickly, he fits a number of the characteristics. He is now 10.5 months old, and I am concerned I should have had him assessed earlier. He had a hard time adjusting to solids, and has never been big on texture in his food. He sleeps very lightly, and I believe had reflux in the beginning. His tongue does have the heart shape, but because it can reach just past his bottom lip, I thought it was ok. He is also a very heavy drooler, even when he isn’t cuttin teeth – we go through so many bibs a day. Anyway, I could go on, but I am wondering who I should see about this? We are in Vancouver,BC Canada. Any suggestions? Thanks.

    • no, i didnt pump at night, well not always. i would rahetr sleep!! i pumped as soon as i woke up, then drank water, washed up, grabbed a quick breakfast, by that time, the baby was awake, so i changed her pamper, then fed her. i always had a lot of milk to spare.my baby slept all night from when we brought her home from the hospital, and only nursed during the day, so i know what you mean. for me, my body got used to her not eating all night. so i only produced milk during the day, when she needed it. boobies are smart like that, they only work when they’re needed hehe. so now, she still sleeps all night for 9-10 hours, and i am not engorged in the morning. when you only pump/nurse in the morning and in the daytime, your boobs will adjust to it.

  23. This was very interesting, thank you

  24. What a brilliant article! A lot of my doula clients in Bradford and Harrogate have benefited from having Ann, the IBLC Consultant divide their babies tongue ties.

    I am also campaigning with Airedale Mums to ensure that the Infant Feeding Advisors at Bradford & Airedale Hospitals are able to cut tongue ties.

    At the moment we have women waiting up to SIX weeks post birth to see an NHS consultant. Not only that, but the consultants often misdiagnose the posterior ties and refuse to cut them.

    If you know of any women who would like to add their voice to our campaign, please ask them to check out our facebook page or email me direct! We already have about 10 women speaking out!!

    Caroline xx

    • Aw thanks Caroline :) Yes it’s great Ann is now the Milk Matters specialist and we can offer division for those struggling to obtain on the NHS or who simply prefer a private option that includes specialist breastfeeding help, tongue exercises, follow up, etc rather than just a simple division. If Harrogate & Bradford I will have seen all the mums you mention, what a small world!

      Yes I’m aware of Airedale mums & the midwifery liaison committee – from Ruth, Doula Rachel Cline & also a mum I supported over that way who I believe is also involved. I only know one mum in the relevant catchment and I believe she is going to write her story down to complain too.

      As you will note from Olivia’s story – the long wait and failure to then accurately diagnose and treat is the reason we started linking mums up for private division. I think even with shorter wait times, the service needs to be SO much more than just a snip and run, many in the community simply don’t have the specialist skills required to say assess whether the tie is healing back down, how effectively baby’s tongue is working post division/how organised the suck is and therefore how effectively he can milk the breast and ultimately transfer milk (remember the tongue has been restricted since conception and as it’s a muscle will likely lack tone). Whether supply has suffered, if supplementation of expressed milk is required and if so how will it be done and how will mum then get from there to exclusively feeding at the breast ie a plan – not to mention the often intense support and counselling mums who have an undiagnosed TT need, particularly if baby has been readmitted for weight issues, if nipples have endured severe trauma etc etc

      The NHS needs to raise it’s game significantly to give parents what they need to succeed, it’s often so much more than just a pair of scissors….

      Charlie
      AKA Analytical Armadillo

  25. Sarah McDougal says:

    Hi there,

    I am not sure if anyone can help?
    I finally took my 8mth old daughter to the oral surgeon re her tongue tie, it is a quite significant one too. He was awfl and rude and said he doesnt divide at all after 3mths old.
    i am so upset with the very rude and unhelpful apt.
    I am frustrated as she struggles with her solid food,(uses her fingers, chokes, cant take spoon feeds v easily) as well as her boobie feeds, which she fusses over untill she gives up, she has fed every 2 hours since she was newborn. The doctor was totally uninterested in offering any advice. He just kept repeating i dont do them. And that it was ok that she was on solids now too….. i had to remind him she is weaning and has not been weaned yet, and i wanted to breastfeed untill she weaned herself. He was so uninterested
    Has anyone got any thoughts on the situation?

  26. Hello,
    I am in the US, so I’m not sure what can of help you can offer, but I would appreciate any advice you can give. I have a 15 week old boy who has had trouble breastfeeding since day 1. He has exhibited numerous symptoms from your list (thank you for that, it was so helpful!). At 10 weeks he was diagnosed with tongue tie and we got it clipped the next day. It has been 5 weeks since he had the frenotomy and we have not noticed any improvement. He has seen numerous lactation consultants and an occupational therapist. The OT and LC we saw today think he might have GI issues. I’m wondering if he is still tongue tied; should we have seen some improvement for now? Or am I being impatient? Any thoughts would be helpful! Thank you for this wonderful website!

    • Julie,

      Where are you in the states? Does your baby also have an upper lip tie??

      • We are in Ohio. The dentist who clipped his tongue said he didn’t think his upper lip was restricted. I think we may go back to him (he’s an hour away), and I’ll have him take another look at it. Do you think that might be part of the trouble?

  27. My son is has tongue tie n had it snipped at 6 days old. He was never able to breastfeed even after having the procedure. He is now 16 months n we have discovered a lip tie at the front of and sides of his top lip that go down to the gums. The main problem seems to be oral hygiene as he doesnt like having his teeth brushed and i worry about food getting caught. I am also wondering about speech problems and delays in speaking even after having the procedure done at such a young age and if the lip tie can effect this. I seem to get very different answers from medical professionals so i was hoping for some advice. Thanks.

  28. my 5mos baby got soft cleft palate, high arched palate and tounge tie.
    any suggestions what to do? she cannot drink milk by herself, using og tube for feeding since birth. always gagged and chocked, colicky, reflux, feeding from bottle becoming traumatic for her. need help here.
    baby got dandy walker syndrome.
    also got problem with breathing, always using mouth to breath and sometimes snored. and etc

  29. bravo!!!!! my youngest was also tognue tied and when my milk supply crashed when he was 3 months old we finally had it diagnosed and went to see dr. Jack Newman at NBCI. the entire procedure took about 8 seconds and he was in my arms immediately afterwards. I think it’s ridiculous that doctors refuse to realize the huge significance TT plays on breastfeeding!!

  30. Thank god I found this article it explains everything and why feeding has been a nightmare no matter what I tried, the health visitors would never of picked it up they didn’t seem to have the same knowledge as what is on here. Can’t wait to get the tie done and hopefully things will get better soon.

  31. Hello…Both of my sons are tongue tied. With my first… I thot he was feeding normally because my breasts didn’t get sore and he grew normally etc. But he def. did make a clicking sound when he nursed and he also ate frequently and cat napped during the day. my second son has more than half of the effects of tongue tie. The doc. said if he was eating fine not to worry. But… we have been dealing with this cough he has from the beginning and we have been trying to figure out what the cause is. I was told the tongue tie wasn’t the problem. but we just did a swallow study test and they told us that he is aspirating when we swallows breast mild and that he needed some simply think stuff to be mixed into his breast milk for now on or he will continue to get milk in his lungs and get pneumonia. So NO more breast feeding. and this simply think stuff has bad side affects in children under a year old. I think that the tongue tie has something to do with why he is swallowing incorrectly but the nurse told me that would have nothing to do with it. And that he just doesn’t know how to swallow the correct way. Does anyone have any advise on this? Has any of your tongue tied children coughed? Or had a swallow test that showed aspirating? Please any info would be wonderful !!!

  32. This is the first time I’ve come across a website with such detailed information on misdiagnosing tongue tie. My baby was able to nurse right away and the first couple days were not painful; however after the third day my nipples were scabbed over and bleeding. From everyone that I spoke to from Lactation Consultant, GP, OB, Nurse, Doula even my dermatologist said that redheads have sensitive skin and same goes with the nipple, since my coloring is so light. With that being said, my baby would turn my nipple into a lipstick shape. I’m wondering if that’s the compression that is associated with being tongue tied, even though everyone checked her out and said that she was not tongue tied. I think one nurse mentioned that she had a high arch, but then someone else had disagreed. A lot of conflicting information that we sometimes get. I ended up pumping and supplementing with an organic formula, which still didn’t give me peace of mind. I ended up not being able to pump enough for her after a couple of months and ultimately had stopped producing milk. I wish I would’ve stumbled onto this site sooner as there possibly may have been someone else that I could have reached out to in the US. I’m surprised that La Leche League had not stated to seek a professional who can diagnose this better in their field then others. Does anyone think that the sucking and changing the shape of the nipple is just a hard suction or more then just that?

    Thanks,
    Courtney

  33. This is the first time I’ve come across a website with such detailed information on misdiagnosing tongue tie. My baby was able to nurse right away and the first couple days were not painful; however after the third day my nipples were scabbed over and bleeding. From everyone that I spoke to from Lactation Consultant, GP, OB, Nurse, Doula even my dermatologist said that redheads have sensitive skin and same goes with the nipple, since my coloring is so light.

    With that being said, my baby would turn my nipple into a lipstick shape. I’m wondering if that’s the compression that is associated with being tongue tied, even though everyone checked her out and said that she was not tongue tied. I think one nurse mentioned that she had a high arch, but then someone else had disagreed. A lot of conflicting information that we sometimes get. I ended up pumping and supplementing with an organic formula, which still didn’t give me peace of mind. I ended up not being able to pump enough for her after a couple of months and ultimately had stopped producing milk. I wish I would’ve stumbled onto this site sooner as there possibly may have been someone else that I could have reached out to in the US. I’m surprised that La Leche League had not stated to seek a professional who can diagnose this better in their field then others. Does anyone think that the sucking and changing the shape of the nipple is just a hard suction or more then just that?

    Thanks,
    Courtney

  34. i dont know how you can say that tongue tie isnt due to bottle feeding. my baby was have trouble drinking his mil when he was born. we was in the hospital for 2 weeks, tried all the different teats and he still couldnt take his milk. before we relised what it was the midwife told us my baby had tongue tie. so we asked the peds to see if we could speak the specialist on the ward to have a look at him. all we got told was he didnt have it. so i got told by one person he did and the other he didnt. i then bumped into the specialist of tongue tie and she had a look at my baby (and husband) and yes he has it. i asked could the reason of him not eating, not putting on weight and constantly being cold down to tongue tie. she didnt want 2 give me a straight answer but left me her private number. i then spoke to the peds again who still told me that it wasnt going to cause me a problem with his tongue tie, and that even if it was i wouldnt get it done on the nhs because i wasnt breast feeding, but it wasnt my fault i couldnt breast feed as i have an illness that could get passed onto my baby. so when we got out of hospital after a couple of argueemants with the peads we got it done privatly. but the thing is i got him snipped privatly and he gained his weight and was able to suck on the teat all after havin it clipped. if we didnt have it done i would still be struggling now!!!

  35. Hi
    This is an interesting read.
    My son is now 10 weeks old. Many health professionals missed his posterior tie.
    One spotted it. We had it snipped at 8 weeks after being turned away once before.
    He has moved from the 9th centile to 0.4 but is now holding steady. However he is feeding all the time. It hurts. He becomes frustrated minutes into a feed. Then is on and off crying in between as clearly hungry.
    He is very noise whilst feeding. He has reflux and lots of wind too.
    We have been advised today tha it may have reattached. Or hasn’t been snipped enough.
    I would love nothing more than to get it resolved but I’m fearful of it not working again.
    Is there any advice?

Trackbacks

  1. [...] problems it can cause to a baby and later on in life and what can be done about it, I have one last link – and it’s a good one!  It’s from Milk Matters, who support mums with [...]

  2. [...] tie, the hidden cause of feeding problems? (however you feed your baby) http://milkmatters.org.uk/2011/04/15/tongue-tie-the-hidden-cause-of-feeding-problems-however-you-fee… April 15, 2011 By Charlie (Milk Matters) 21 [...]

  3. [...] UK website, Milk Matters, has a ton of information on tongue ties and how they can affect not only feeding, but also so many other aspects of life if not clipped. [...]