Supply Issues in the Baby With Tethered Oral Tissue (TOT)

Supply Issues in the Baby With Tethered Oral Tissue (TOT)

(This is turning into more of a book then a paper, I think I need chapters, page numbers and a table of contents! Thank you for bearing with me and to all the couples out there who have helped me to see the whole picture)

 NOTE ....The words compensation and compensatory behavior will be used frequently. This only means that your baby and you are figuring a way around the issues. These suggestions are an attempt to get back to 'normal', non-compensatory behavior. 

A good example of compensatory behavior is mouth breathing. If the only way I can breathe at night is thru my mouth, so, of course, I snore, even though it should be thru my nose, I'm going to breathe thru my mouth. I am compensating for my inability to breathe thru my nose while sleeping.

Another good example is riding a bike with one flat tire.... you WILL get there, it won't be fun or scenic, you will be exhausted and not looking forward to your next ride.

Also, in this paper, I am ASSUMING the TOTs (tethered oral tissue, as in tongue or lip tie) have been addressed AND taken care of. Take the time to find a person who KNOWS TOTs and have your baby examined by them. If your HCP says "TOTs ARE A FAD". don't waste your time arguing, just get up and leave, go home and find the list of preferred providers in your area and go see them. Don't waste your time or $$$ on the naysayers. Things will only get worse. 

AND Most importantly, remember that fixing the TOT is only 1/2 of the fix. We have to fix the flow issues as well or YOUR baby will be one with multiple tearful revisions. Supply issues are AT LEAST as important as the stretches (if not more important) because with a flow that is compensated, your baby will not have a chance to learn proper suck/swallow and the misery continues. Just like going for another ride on that bike with one flat tire!

I do not think the frenulum will stretch or change. If you are of the belief that your baby only needs a few sessions of body work, without an actual procedure to fix' the TOTs,  I am NOT your gal! I like happy, rolly polly babies who's needs are met on demand.

I see mothers compensate for TOTs in two major different ways. One, OVER SUPPLY(OS) so the baby doesn't need to learn to suck/swallow. They basically live off of 'easy' 'bite milk'. Although these babies gain well and milk appears to be copious, they are pretty miserable with reflux, gas, fussy, colic, restlessness, sleeplessness, constant wanting to be held and, at some point (3-4 months) the copious milk supply WILL tank. These moms can pump extra milk like crazy and build a big stash which, in general, does not help with the issue at hand.

OS and OALD [Over Active Let Down] and OMER [Overactive Milk Ejection Reflex] are ver different issues. OALD and OMER are hormone driven, RARE and could be an inflammatory response to birth, diet, or life style.

It took me a long time to see, learn and label the differences. OS is a survival response. Make lots of easy, free milk for a baby who, at one point in evolution may not have made it without their mama's milk.

Or TWO, they don't produce enough milk for the baby. This is UNDERSUPPLY (US) These babies are pretty miserable too.. and hungry.

Both conditions produce fussy, restless, miserable babies. Many of the behaviors are the same for different reasons. The flip side of the same coin.

Examples.... OS babies feed frequently and rarely settle. US babies feed frequently and rarely settle. The OS baby feeds frequently from the exhaustion of trying to keep from choosing to feel like they are drowning or letting go so they can breathe. The US baby feeds frequently from the exhaustion of trying to get enough milk to survive. Both issues are exhausting for different reasons. Neither of these babies ever has the satisfaction of that nice warm full feeling. Every feed is a struggle.

Herein, I am going to attempt to explain whyand how to help both conditions.

Be patient and read the parts that pertain to you many times, quickly or slowly, it will make sense and you will all be better for it!

The constant message of efficient milk removal is what puts the mother into normallactogenesis lll. (Baby or pump driven supply). Lactogenesis lll happens about day 8, 9, or 10 and continues until weaning takes place. During Lactogenesis lll, the prolactin levels drop off, so having your prolactin level tested at, say, day 21, and having your HCP or IBCLC say they are too low is bunk because prolactin IS low now. Prolactin levels are highest during the immediate postpartum stage as Lactogenesis ll begins. When the progesterone levels drop due to the delivery of the placenta and prolactin kicks in to get the milk making business going. So, typically, on day one and 2, very little milk is present but there is the very important colostrum present. Then by day 3, 4, or 5, here comes the milk, and Lactogenesis ll is here. The start of which may be greatly influenced by the birth. The more trauma, fluids, length of labor, inductions, retained placenta, etc the longer it can take. Which will in turn, delay Lactogenesis lll (That's another article all together, but I will touch on it!)

I have no idea why some mothers respond with too much milk. In the case of too much, could it be the 'survival' mode of the mom??? I truly don't know. In these cases, we do not 'assume' TOT because the baby is gaining, pooping and has lots of wet diapers. But the mom knows something isn't right. Get your baby checked!

It makes more sense that the supply is low due to inefficient milk removal. These are the babies that we 'assume' TOT. These are the babies where the mom is heard and supplementing is usually recommended.

In both instances, the mother's will complain of sore, cracked and or bleeding nipples, Crying, fussing, miserable babies. (Big red flags, these symptoms are NEVER ever ever 'normal')

I will attempt, herein, to explain both issues in depth. Please take the time to read this a couple of times the go over the areas that seem true for you and your baby.

For the Under Supply

For the sake of understanding, let me clearly state this is about low supply in relationship to TOTs, not PCOS, IGT or other inherent issues. There are other amazing women, Diana West and Lisa Marasco, both IBCLC's who specialize in this! 

Because I am of the belief that an underweight baby is a hungry baby and a hungry baby is a baby that could be experiencing both emotional and physical pain, I think the most important path to take quickly is the one where the baby starts to feel full and the baby has the ability to build trust around feeding and food. Healthy eating habits and trust around feeding and food starts at birth.

First, a complete PROPER oral exam is required by a preferred provider. If your gut is telling you something is wrong, listen to your gut, don't take no for an answer and keep looking until you find the answer you need. Or at least the answer that makes sense. If you walk away with more questions then when you went in, please, find a new provider.

If we are asking these babies to build trust around food then we need to give it to them in a way in which they can have a relaxed enjoyable feed over and over again (no tight fists, no popping off, falling asleep, fighting going to the breast or crying unconsolably. When the baby gets stronger ie: weight gain and the milk becomes more prolific, these babies seem to do a lot better, plus they are a lot happier.y

When you think that a baby eats about 10 times a day which is 70 times a week, we may need to change their eating patterns for a few days before they (we) get the hang of it. Patience and help are highly recommended.

The US baby may suddenly sleep a lot, weight may start to tank along with the supply. These are the babies starting to fall into the FTT spectrum. They need to be fed, the milk needs to be recovered.

My thought is that if these babies need to use a slow flow bottle or finger feed with frequent feeds to put the weight on and get them out of misery then they deserve to use a bottle or finger for a while. Suck training and finger or bottle feeding while supplementing with EBM, donor milk or formula may still be required to get back to the breast. They will go back to the breast!Maybe not tomorrow, but at some point. Maybe a week, maybe a month, maybe 3 months. I have seen it all!

That old myth that a baby MUST go to the breast frequently or they will never breastfeed, is just that; an old myth. First we must establish a healthy milk supply/flow and a baby who knows how to suck/swallow. THEN and only then can we get them together again! We can have lots of practice sessions but unless we establish supply and suck, it will all be for naught.

Also, we read all the time that a baby has a better suck then the bottle. Even IBCLCs, HCPS, LLLs still say this which is true if your baby has a proper suck. If not, the pump, while the milk supply is being established, is better.

I also believe that these babies are suffering physically and emotionally because of their hunger and whether they are under or overweight, it is a sign of compensatorybehavior. 

The most important thing is to get the baby eating properly and un-doing the compensations. Re-learning behaviors is easier the sooner it is started. 

In the case of US, it's very important that the mother hook up to a hospital grade pump every three hours so that there is no doubt in her brain (not body) that she needs to make a regular supply of milk. This is where galactagogues come in very handy. Although outside my scope of practice, I really like motillium/domperidone at this point and I recommend the protocol of JACK NEWMAN MD for its use.

These babies cry frequently, want to be held 24/7 or just 'happily eat enough to maintain', (not grow or gain) and sleep 'well' for short spurts. Unless you have a very savvy HCP, by the time they notice the drop in weight and the falling off of the growth curve, the problem could be huge.

Of course the mom has already known this since at least day 4 which is roughly 40 feeds! Add 10 un-satisfying feeds a day, every day, it's no wonder you feel like you are losing your mind. HCPs who say 'everything looks great' or 'just switch to formula are not worth your time. Find someone new! Often times it is well meaning family members who will make this suggestion as well. Set boundaries now!!!! Tell them, "I love the food you are bringing to us, not so much the advice. This is important to me and I need your support".

This is where 'dream feeding' is a life saver for all. You do not need to wake a baby up to feed them! You can offer a baby food (again EBM, donor milk or formula) via finger or bottle every 90 minutes while they are asleep! After about 24-48 hours of this, they will wake and ask for food. It's miraculous. I love it. This can be done by any of your helpers. Your SO (significant other) can do this and you can sleep or pump. No need to wake the baby, they will happily dream feed. Babies will readily respond to a bottle or finger feed while sleeping. Just wiggle the bottle or finger in their mouths, twist it about a bit and usually, they start to suck. They can be burped while sleeping too. They need the rest and recovery time. Yes, you may use a cup or spoon, I happen to think they involve more work and for the sake of exhaustion in the parents, I recommend a finger or bottle.

It is great to discuss a 2 day feeding plan with the family. i.e.: mama pumps every 3 hours while someone else feeds the baby. I encourage these moms to put the babies to the breast when they really want to, but not in place of a pumping session (this is the hardest part to explain to a struggling mom). With these weaker babies, a nursing session is not nearly as good as a pumping session. Although, I am quick to remind them that our goal is to exclusively breastfeed soon. I can't emphasize this enough. Even if your baby has been hanging out at your breast for an hour, you need to PUMP. A baby with a weak suck is sending the message that 'no milk is needed' a pump is sending the message.... YES, WE NEED MILK. I often hear moms say they are feeling they are bonding with the pump instead of the baby. Put your baby to your empty ( they are never really empty!) breast and do some comfort feeds. But not at every feed NO MORE TRIPLE FEEDING .  ITS TOO EXHAUSTING.

Make all plans doable. Like 2 days at a time and then re-evaluate. Make the plans at a reasonable hour (not 2 am!) and stick to your plan. If your partner agrees to do the night feeds, they mustn't fight it at 2am! If they are doing an OK job, try not to micro-manage, just get thru that pump, that feed!

Switch up what needs to be changed (frequency of feeds, amounts of food etc but not the pumping)! In 2 more days, re-evaluate, switch things up again, if you've been using finger feeding, try a Dr Brown's Preemie bottle. If your milk supply is recovering, perhaps go 4 hours between pumping AT NIGHT ONLY! During the day, it's back to every 3 hours. (I know, it's tedious, boring and it feels like you aren't bonding with the baby but with the pump. The pay off will be great! It is a short term commitment to what could be a long term problem.

Once the baby's weight is back up, the feeding/pumping must continue while the mom recovers her supply. This takes a lot of pumping, galactagogues and family support.

They generally put on 8-12 ounces in a week (sometimes in a day!) depending on how much they have lost.

These babies recover quickly with calories on board and usually within 24-48 hours you will notice changes!  Often times they are back to asking for food every 2-3 hours, more pees and poops, sleeping better and happier. It's a beautiful sight to see.

I do think that a baby at the breast is optimal and it IS my goal but only when it's working properly and the supply is efficient. If a baby is unable to suck properly, the message will not get to the brain in which case we need to use the pump until the baby gets strong enough for the brain to clearly get the message and the supply comes in for the first time or returns. Then do the happy dance 💃🏻.

The old saying goes, "the baby is better than the pump". This is ONLY true when a baby has a good, strong, vigorous and proper suck. A weak baby at the breast is a sure way to lose a hard worked on milk supply. That is why, even if the baby is going to the breast, but mostly for comfort, pumping MUST continue on a regular basis.

In both of these situations I encourage lots of skin to skin, bathing, cuddling, tummy time and rest. Even if they are at 6, 8, 10 weeks... they need to rest and recover. Mom needs to be brought food and liquid on a regular basis... every 2 hours. Don't ask her what she wants, just give her food, if she doesn't eat it, don't take it personally, just bring something else. The last thing many of these moms want to do is make another decision. They are no doubt exhausted, defeated and could be seeing all of their decision making as 'bad' decisions that got them both into this place, so we need to tread lightly! Add in a birth they didn't plan for and we have one defeated feeling mom!

Over supply(OS)

A mom who is producing an excessive amount of milk, if that is how her body is compensating for her baby's inability to learn a proper suck/swallow, this too may be part of the problem and not part of the solution.

First, a complete PROPER oral exam is required by a preferred provider. If your gut is telling you something is wrong, listen to your gut, don't take no for an answer and keep looking until you find the answer you need. 

In the case of oversupply, these babies are the most likely to fall thru the cracks because they are usually gaining weight well so "what could possibly be wrong"?

These babies are also really miserable. They are fussy, gassy, hungry all the time, don't sleep well, spit up after every feed, have green frothy poops and want to be held lots. (I look for 2 or more of these signs). These are the babies most likely on 'reflux meds' or diagnosed with 'COLIC'. Believe me when I tell you that colic is a symptom, not a diagnosis. Nobody cries for hours on end because they are happy...

The mother's of these babies are also miserable. The mother's will complain of sore, cracked or bleeding  and mis-sharpen nipples. (Big red flag, AGAIN, this is NEVER ever ever normal).  because their nipples are badly damaged by the baby trying to stem the flow of milk by pushing the nipple into the nook in their palate (see article on PALATE ISSUES IN THE TOT BABY) or pinching off the milk flow with their tongue pushing the nipple into the gums (ouch). These babies cry unless they are being held, rocked, bounced or changed.  They tend to want to feed constantly, even though they just ate. They spit up, fuss, belly ache and can't be soothed. Feeds take forever with these babies too because they are living off of what dribbles out, (what I like to call 'bite milk'). They don't dare suck and swallow for fear of drowning. It's tough when your baby has to choose between eating and breathing. AND it's exhausting. Theses babies just take catnaps and try again. Their little fists are in balls and they are tense. The nipples NEVER get a break! I consider 2 or more of these symptoms a red flag when I am taking their history. These are the mom's who proudly tell the group, "I can pump 4 ounces in under 5 minutes and I have a freezer full of pumped milk" never realizing this is a big part of the problem

In both of these situations I encourage lots of skin to skin, bathing, cuddling, tummy time and rest. Even if they are 6 weeks... they need to rest and recover. Mom needs to be brought food and liquid on a regular basis... every 2 hours. Don't ask her what she wants, just give her food, if she doesn't eat it, don't take it personally, just bring something else. The last thing many of these moms want to do is make another decision. They could be seeing all of their decision making as 'bad' decisions that got them both into trouble so we need to tread lightly!

So, how do we fix OVER SUPPLY (OS)? First, like US we need to fix the obvious things like TOT. We need to slow down the flow/supply, AND, we need to help the baby relax, trust food and trust us that feeding at the breast is a safe, comfy and warm place to be

I have never found block feeding to be a very good solution to this issue. I realize it is highly recommended but the info is a bit dated and it doesn't usually work... 

This is where I run into resistance! But trust me here!

Most babies born with TOTs also have high, arched or bubble palates or as I like to call them, palates with nooks! They can be referred to as 'a bubble palate'. A nook is like a safe place where we like to put things. It is easy to feel in your baby. It is right inside the gum line and the minute you put your finger there, they will push against it with their tongues. For an orally compromised baby and a mom with an oversupply, this nook becomes a very safe spot for the baby and a very painful,spot for the mom. This is the 'default' position. This is where the tongue will often go to. This is the spot where they try to pinch off the flow of milk. This is where the 'lipstick' shape gets made, this is where the nipples get cracked, blistered and bleed. Generally these babies have a very shallow latch, they gag when anything gets near the soft palate. There is a good reason for this, and it is pretty easy to remedy! 

Right now, stop what you are doing and with your tongue reach back to find the soft palate. See how nice and soft it is? If your baby was able to maintain the tip of your nipple there, you wouldn't feel any pain! No more cracking, bleeding or misshapen nipples. 

For the mom with OS, this is a very scary place for the baby. The TOT is revised, the baby can finally suck/swallow properly and when they try, BAMMO, it feels like a flood. They immediately default back to putting that nipple in the nook. They don't want to drown, they don't want to chose between breathing and eating. 

So we start to help the baby build trust around feeding properly. There are a few ways to do this:

1. Laid back breastfeeding
2. Use a Dr. Brown's preemie or ultra preemie bottle for a couple of days
3. Finger feed by placing your finger to the soft palate first, then insert the tube. If the baby starts to gag, move your finger back a tiny bit but not out of the mouth. These babies are not choking, but gagging which is a common reflex. With a few tries you will get closer and closer to the 'sweet' spot where proper feeding can take place. You will notice that the baby starts to relax and un-clench their fists. The get in a full feed! They get milk drunk and happy. They 'sleep like a baby' they don't cry, bellyache, throw-up, have green frothy poops, hiccups or restlessness. 

Now, we need to get your brain to realize that the baby is ok and can regulate the milk. This is the frustrating part! 

Most people with OS due to TOTs will suddenly notice their supply tanking between 4 and 6 months. You have heard it many times before... "suddenly my milk just dried up, so I had to quit". 

If you are still in the first 3 weeks post partum, the shift will be relatively easy, beyond that it becomes harder. 

I highly recommend using a bottle or finger until the baby gets used to a rhythmic suck swallow, no choking, sputtering, gagging. If you are feeling a burning need to breastfeed, try the baby on an 'empty' breast, the breast is never totally empty, it just feels that way. 

If your baby is finally building trust around feeding and you put her/him to a full breast, flooding will happen again and the old behaviors will come back. This is (IMHO) very scary for babies. 

Depending on the age and severity, the first day I recommend one full, pump-till-empty pumping. You may get 12+ ounces. For the next 2 days, I  would pump to comfort or baby's needs, whichever comes first. No need to build a stash now. You can do that once all is back to normal! Plus, you no doubt have a huge stash already. As soon as your breasts start to feel full (not all the way to engorgement which leads to mastitis and plugged ducts (which you have probably already had too), pump for about 90 seconds or until comfort, then at the 3 hour mark, pump enough for a feed. Do this until you no longer need to pump between feeds and your output is similar to your baby's intake. This may take days or weeks but each day will be better.

If your baby is fearful of the breast, or no longer recognizes it as a food source, try using a nipple shield. It's not the shield the decreases milk supply as is stated in so many places, it's the baby's inability to efficiently transfer milk. As long as there is milk in the shield every time the baby comes off, your baby are working well! Also, the shield is a little firmer and kelps the baby to open wide and not clamp down so easily, it helps get the nipple further into the mouth and it keeps you, the mom, out of pain.

When you do put the baby to breast, you may start in a sitting up position and then roll back to a very reclined position. A place where all the baby needs is support across your chest and gravity will hold her/his little head to the breast. (Perhaps a pillow under the arm on the side where the baby's head is). In this position, gravity also helps to slow the milk down. If it starts to go too fast, your baby may easily let go and you can just let that milk run off and the baby will no doubt put his or herself back on all by themselves. Sometimes they get frustrated and need a little guidance but each time it gets less awkward and easier for the baby, and the position will seem easier for you, to the point where you can startin a reclined position. There are some great articles on line about this positioning with videos on you tube. It's called LAID-BACK BREASTFEEDING or BIOLOGICAL NURTURING. I know you can't do this forever and as soon as that milk slows down to where your baby is regulating the flow, you will be like all those other mamas who make it look so easy! Standing, sitting, lying, walking, in a carrier, in the car seat... ALL OF THAT!

The side-lying position may still be too much for the OS baby and mom as gravity may still push the milk out too quickly. You will get there! 

Your body has been beautifully working overtime to help your baby survive... This too shall pass. Things will change pretty quickly.

I try every bottle I recommend. A proper suck swallow is pretty difficult. Try a couple of bottles, see if you can do it, work those muscles in your tongue. I was shocked by the difficulty of it. When I had my tongue released, one of the exercises I did was to learn how to suck swallow properly and I used a Dr Browns preemie to learn! I also made myself lick things our of the bottom of a bowl to stretch the muscle. 

I am not a fan of AWM (Active Wound Management), I'm a fan of proper breastfeeding! I will not ask a parent to inflict pain on their baby. Instead, I teach proper breastfeeding. What better exercise is there then using the tongue properly every 2-4 hours 8 to 10 times a day? Will stretches or AWM ever be needed? They might, on occasion and very gently, but I'd rather follow this protocol then have a baby develop breast or bottle aversion.

The things I haven't covered in this extremely long article are:

TUMMYTIME! does every baby need it? YES, YES AND YES. Please look this up and or take a class! It works wonders and the creator of it, Michelle Price Emanuel KNOWS HER STUFF!!!! 

Lip blisters (no they are not 'normal')! 

Car seat aversion.. often a sign of TOT because TOT is a mid-line issue

What have the parents been thru, how can I be part of the solution and not the problem?

Body work? Does every baby need it? 

Torticolis 

Pooping at least once a day (not pooping is NOT normal).

I hope this helps all of you,

Annie VerSteeg IBCLC, RLC.  

Annieibclc@gmail.com

January 23, 2017

May be reprinted with permission and credit.