Interview with a Lactation Specialist on Torticollis Treatment

Dr. Anik: Nice to meet you Dr. Hazelbaker. My name is Anik and I'm a chiropractor who  very much pediatric-centered. I work mostly with pregnant women, babies, and younger kids. I've been doing this for about 20 years and as time goes by, it seems that I've become drawn more and more into the world of torticollis. I'm not sure if it just happens to be making its way into my office more than ever, or if there really is a significant increase in occurrence of torticollis. What I do know is that parents are largely misinformed, even though there's a lot of great information for practitioners online, there's not that much information for parents... so I wanted to do some outreach.   I'm creating an online course to help guide parents - not only with information on what to look for and how to properly assess and diagnose torticollis, but be aware of the finding often associated with it.

I also want to include specific resources.   Sending people in the right direction with a list of practitioners, so that parents can find people near them who really understand torticollis and how to deal with it, without using invasive methods and without minimizing it. 

It's interesting how when you really dive into something you realize there's a whole world around it. That's how I came across your name, and I was really excited when you agreed to spend a few minutes with me - I appreciate it.

Dr H: Oh, no problem whatsoever. I mean this is something that we have to unite in, because we've got an awful lot of babies who are being mis-diagnosed and having unnecessary surgery, which damages them and doesn't correct the underlying problem. As you know, torticollis is often confused with tongue-tie, which is something that we've got to get the parents to know about, so that they don't go to the wrong practitioner. The kinds of things that are happening to babies... it's just ridiculous.

Anik: It's shocking isn't it?  I was wondering how you got to be so focussed on what you do? You seem like you really are hyper-focussed in a great way. How did you get there?

Dr H: Well, I started out as a professional dancer (no, the not the strip-pole kind!) and when I had my first baby I got started with La Leche League International. Then I was training to be a midwife, and was about half of my apprenticeship when I had my second baby. Then I became heavily involved with La Leche League International and decided that I didn't like getting up in the middle of the night with two young children at home, so I started to focus on breastfeeding. From there I got my Master's Degree in Human Development, specializing in Human Lactation. My mentor was a Speech and Language Pathologist, so she came at things from a, "Here's normal and here's what deviates from normal," viewpoint.

Of course a lot of parents weren't complying, but nevertheless in 2002 or so, the torticollis stuff started. I think that it was a perfect storm of influences that have led us to this point. About that time I was doing my PhD in Psychology, specializing in Energetic and Transformational Healing.  I do cranial, sacral and I really specialize in Developmental Trauma. That's my thing. I began to look at the sucking problems as being signs of infant trauma, fetal trauma, and started to work with babies from that perspective as well. So I've landed here talking about, "Look, the baby's a conscious human being, so let's stop performing laser surgery on them, and get down to what's really happening."

Anik: Right. That's fantastic.  When you speak of trauma like that, are you referring specifically to birth trauma, or in-utero positioning trauma?

Dr H:  All of it. Back in the early 2000s  we started seeing such an exponential increase in suck-wallow-breathe disfunction as a result of the epidural epidemic. I used to relate it to birth issues. Then I started to talk to midwives and started hearing about babies who were having problems even when they were born at home, without any intervention.  Then, listening to Gail Tully (midwife and creator of Spinning Babies), Karen Strange (midwife and neonatal resuscitation expert), and others.  My own daughter is also a midwife.  I began to put two and two together about the in-uterine issues, and in-uterine trauma. About that time I got my pre- and peri-natal psychology degree. That pulled it together for me about the trauma piece, and how if we're busy separating body and mind, then we're missing the boat. You can't do that, there's just all one thing. So where you've got physical stuff going on, you're going to have emotional and psychological stuff as well.

Anik: Absolutely, and neurological consequences. Speaking about breastfeeding very specifically: when you think of a baby with torticollis, are there specific signs and symptoms that you go out of your way to look for, that you assume you'll find as far as breastfeeding goes, in a baby with torticollis?

Dr H: You're gonna have asymmetrical tongue posture. On the effected side, which is mostly going to be the right, the tongue is retracted.

You're going to have peristaltic falses deficits.

You're going to have tongue extrusion deficits.

You're going to have a tight jaw and a tight upper neck, right? I mean, that's just a given.

You're going to have swallowing problems, and suction problems.

All of those things are going to be true, with every baby with torticollis, hands down. And I've worked with hundreds of them. That's definitely going to be the pattern. And this whole thing that Catherine Watson-Genna (Lactation expert) was originally talking about where the tongue twists, when the baby tries to lateralize the tongue, that's torticollis, not tongue-tie.

So unfortunately some of these deficits are the same kinds of problems that we see with tongue-tied babies. Hence the confusion of many lactation consultants, midwives and pediatric health care providers who just do not understand what they're looking at. They don't have the musculo-skeletal knowledge.

ANIK: Is this what you refer to in some of your writing, when you talk about faux- tongue-tie?

Dr H: Yes. Faux-tongue-tie technically is a baby who scores borderline on the outlet. Now they may have toward a column, they may have cord wrapped around their neck, they may have in-uterine lie issues. They may have been breached. A lot of different babies will fall into the 'faux' category. I coined the term because of the little strip of scoring in there that's borderline that we used to go, "Let's just manage this away."

If a baby scored a 9 or 10 on function, but maybe a 7 or 8 on appearance, we'd just change their positioning latch, and do a little bit of finger feeding, they would straighten up, and their scores would improve. I rarely saw borderline scores, but in the early 2000s I had baby after baby after baby scoring there, it was unbelievable. It was like, wait a minute, what is going on?

So in 2012 when Watson-Genna, and everybody else was picking up on this thing that they call 'posterior tie' - I mean, she had gone all around the world promoting this concept of the 'posterior tie' - I said, "No, that's not what's going on. I've never been a proponent, I've been attacked for not being a proponent and that's not what's going on. What's going on here is structural stuff." I thought, "I've got to let people know that there's something to substitute for what people call 'posterior-tie' so I named it 'faux-tie' in order to combat what was becoming a heinous epidemic of treatment of babies without proper diagnosis. That's what faux-tie means.

Anik: That's really smart and I actually see that a lot  - when I look in a baby's mouth, if I have any any concerns I send them to a Lactation Specialist right away because I'm definitely not a lactation expert. But as you know, doing a lot of cranial work,  anytime that there appears to be a breastfeeding issue, there are usually some significant distortions in the cranium. In the absence of any visible tongue-tie, tongue-mobility issues seem to be present. Over the years, I've been confused because I was convinced  that babies with torticollis were more likely to have tongue tie, despite the lack of anything indicating this in the literature.

I would ask the craniopaths, and everybody I asked would say, "That's not reflected in the literature at all." I couldn't figure out why until I read some of your information on faux-tie. Then I really dove in because that makes perfect sense. And neurologically it makes a lot of sense too.  Torticollis,  really is a neurological issue. It's not just an aesthetic issue, it's not a tight muscle, it has a fundamental neurological component, which of course would involve the tongue and the TMJ and, and everything else. And so in your experience, what are the ramifications of an unresolved torticollis for a baby's wellbeing, both in the present but also in the long term?

Dr H: Well, I don't have the opportunity to track babies over time, I certainly don't work with children who have untreated or unresolved torticollis. I'm going to make a distinction between soft-tissue-acquired torticollis versus congenital muscular with the benign tumor on the SCM. My experience is that:

First of all, vestibular control is going to be off.

They're going to have difficulty integrating some of their postural or their primitive reflexes.

They're going to have difficulty, I think activating their postural reflexes.

They're going to have difficulty with posture.

They're certainly gonna have difficulty with learning as a result.

So I think that's a big deal. I don't think it's a small deal, but who's doing the research on acquired-musculatory to call us, especially given all of these other influences that we have with children, and some of the crap that we do to them.

And how do you tease out the acquired-soft-tissue type from the 'back to sleep' campaign, which has its own vector of insult too.  Talk about a neurological problem when you can't get into Deep Delta and program your brain for rest, relaxation, repair and growth.  A child is too activated on their back, and they've got flat-head to boot, how do you tease all those vectors out?

It's gotten just so darn complicated, and I think that a lot of people just aren't looking right, justifying the short term gain, and forgetting about the longterm cost.

Anik: Exactly. That was actually going to be my next question. Do babies who come to you either with a torticollis, or even a distorted cranium because of the torticollis often come with a diagnosis which is purely aesthetic or postural? 

Dr H: I find that they haven't been diagnosed at all.   With most of the tort babies that I see, nobody has said anything to the parent about it. And if it was mentioned at all,  it was simply "Oh, you know, so the baby has a head-turning preference. It's okay. They'll grow out of it."

Anik: Exactly. Meanwhile, if we're talking about 25% of babies and now we're looking at learning issues, potential sensory integration issues, and we're seeing what's happening in our schools,  we have a major problem on our hands. This is exactly why this course is so important to me, because parents just aren't being educated. And I'm sure you're finding the same thing. Anytime I sit down with a parent, particularly the Mom, they inherently know that something isn't quite right, regardless of what they've been told in terms of "they'll grow out of it, or it's just a tight muscle, just stretch it, or just do this".  

Or, the cranial distortion is being dealt with very invasively with helmets and that sort of thing. 

I do see more and more helmets these days, which really concerns me for many reasons.  I wonder how you find a helmet would impact breastfeeding?

Dr H: I can't even answer the question, because those mothers have long ago quit. As you know, they're certainly a going to limit the cranial development. But here in the United States, we don't believe that the cranial bones continue to move, but you and I know that there's cranial movement throughout the lifetime. So I can't answer the question because I literally have never seen a breastfed baby in here who is helmeted.

Anik: Yeah. I don't think I have either.

Dr H: I can't answer the question, but boy, it sure is an interesting question. It's important to ask and to get an answer to. Because who knows what the longterm ramifications of helmetting are, anyway? All you're doing is molding the bones, you're not taking care of any of the neurological ramifications.

Anik:  I also have a concern over the lack of any informed consent with helmets - these conversations aren't happening with parents. It's just, "Put it on and you'll have a nice round head, and then you can move on. Everything's going to be great." Right?

Dr H: That's based on that cognitive bias that the plagiocephaly doesn't create any kind of motor developmental delay, or cognitive delay whatsoever. But what I like to ask is, "What is it that makes you think that smashing the brain tissue in towards the midbrain isn't creating some sort of a problem? You're affecting one of the major motor components of the brain, the cerebellum, with a flat head. So how is it that you think that this doesn't have some longterm ramification?" It just doesn't make any sense.

Anik: No sense whatsoever. One of the doctors that I just was speaking to a little while ago is a craniopath, He was saying that because of the forward head posture that helmets create, especially anytime a baby is in a car seats, or even just the weight of the helmet posturally, neurologically, just that alone has effect on the cervical spine: it's a very dangerous thing.

I just registered for your course, your torticollis course on your website cause I want to take that as far as being able to, cause that's the piece that I'm realizing I lack even in my course; the idea of while you're working on resolving the torticollis, how do you advise the mom in terms of breastfeeding techniques so that she can continue? 

Dr H: For so many of these kids, until you get the cervical spine freed up enough, and you get some balance with the laryngeal deviation that occurs, and the hiatal deviation that occurs, the swallow is significantly impaired.

I find that it takes a lot of work before we can get that aligned correctly, where the baby can coordinate the swallow in such a way that they don't have to hold their breath, and they don't have to clench their jaw. So the key component is getting that jaw to unclench and getting the, the swallow portion straightened around.

Everybody talks about, "The tongue, the tongue, the tongue, the tongue, the tongue." No, it's, "The throat, the throat, the throat, the throat." I think that this is why so many people miss out on the understanding of what's going on.

You know, they're talking about 'tongue mobility being impaired', well, no, the tongue can compensate, okay, it's the swallow that's impaired, and that's what has to be fixed in order for the baby to get back into a nice rhythmical pattern. But in order to get the swallow straightened around, that throat has got to be straightened around.

Trying to get that message across has been very frustrating for me, yet I'm very passionate about it because, in as much as I'm a proponent of clipping a true tongue tie, I am an opponent of just willy-nilly cutting a baby when we know it's not going to do anything. We have proof that it doesn't do anything.  The anecdotal evidence is so dramatic - we know that greater than 50% of these babies do not improve with ectomy. So why do we keep doing it? Why, why are we doing this? Trying to convince my profession that they got it wrong, and that they need to get it right now, has been really frustrating. Then you have all these other influences, the dentists, and all who, as good hearted as they're trying to be, have muddied the waters.

Anik: Exactly. It's such a compartmentalized problem. It's just the tongue, or it's just the SCM, we don't look at the child as a whole, the way we should.  If you were speaking to a parent trying to explain, for example, the link between torticollis and breastfeeding issues, how would you go about explaining that?

Dr H: I focus on talking about swallowing, and talking about tongue posture. I will demonstrate using a diagram and say:

"These muscles are linked to the tongue organ, so when these muscles aren't doing what they're supposed to, and these nerves aren't doing what they're supposed to, the tongue gets retracted.  When it's retracted the swallow gets upset, and the milk can threaten the airway, so your baby will breathe in a different pattern. Because of the way torticollis affects the upper cervical spine, your baby's going to have a tight jaw, and this is why your baby doesn't open their mouth wide enough. This is why your baby doesn't latch on correctly, and this is why your baby has dysfunctional sucking."

And that seems to be enough for them. Occasionally a parent is knowledgeable enough that you can go into greater detail, but they pretty much get it, but at that point they're pretty desperate just to get it fixed.

Anik: That would take me to my next question. This course is one of the first times that I'm going with parents beyond my own community, and beyond the community of chiropractic practitioners. I'm trying to advise people in the right direction in terms of seeking out resources for practitioners. I'm on the West coast, so if somebody in New Jersey or Maine needs the help of a lactation specialist, is there a resource center that you can recommend?

Dr H: No. If there's an occupation consultant that's connected to a chiropractor that's connected to an osteopath, then that's going to be a better resource. But I'm sure part of the frustration for parents is that they really don't know who to go to. But there is enough discussion about tongue-tie on Facebook, etc, that often-times those groups know exactly who to send the parent to, and get the tongue clipped or lasered, you know, as it's become the most popular thing that parents do these days.

But in terms of going for musculo-skeletal evaluation or whatever, there isn't that kind of a network that has developed as well. So I advise people to seek out any body-worker in their community, whether it be a myo-facial therapist, or a cranio-sacral therapist, or an occupational therapist, because they're body-workers too. If they've seen a chiropractor themselves, see your own chiropractor, and find out who in your community has the pediatric experience that's required to do this effectively.

And unfortunately, oftentimes I say, stay as far away from the lactation consultant as you can! If all they're going to tell you is that your baby's tongue-tied, then get away from them. If they don't know about musculoskeletal issues, then they're not the appropriate lactation consultant to see.

Dr. A:  Sending parents in the right direction is imperative.  1/4 of babies born with torticollis with very little awareness is an epidemic...

Dr H: It's a huge concern. Talk about a super-epidemic. I mean, and you and I both know that it's not 25%. It's high and you know it just depends on how you define it. I think that it's way higher than 25%,  probably more like 70%. I wish there were a way to get the message out. I've been speaking about it for years and years.

Interestingly at Gold, the online lactation conference, there was a chiropractor who just did a beautiful job of talking about musculo-skeletal assessment for lactation.

She just did a beautiful job of helping people to see, "Look, this isn't difficult. You don't have to be a physician to do it. As a matter of fact, it's good thing you're not, because they don't know what they're looking for, and here's what you need to look at. Here are your tools, that you use in order to to determine what's going on. Now you aren't necessarily skilled to treat it, but here are your resources. This is who you send to if you see these things happening."

It was just a really excellent presentation and Gold is international. It's very influential, so I think the word is getting out.

But I do think it's a matter of really hitting hard on, "Look, here's your simple method of assessment, and this assessment can be done on every single baby you see. Alongside of assessing what's going on with the tongue while sucking at breasts, you must, must, must, must look at head-posture on top of the neck. You must look at it because it gives you a clue as to what's going on. And here is immediately what you do about it, you don't wait, you send them immediately to the appropriate practitioner, to start work."

We certainly have a lot of work ahead of us. I'll tell you what keeps me going is seeing the look of relief on the mother's face when I tell her, "It's not this, that's not what's going on for your baby, it's this. And this is what causes it. And this is what we do to fix it. And it is fixable, this is what it's going to take for us to do it."

And my goodness, they just go, "Oh, okay, now I have an answer. Now I have an answer that I feel good about. Instead of thinking about putting my baby under surgery, you know, having a laser procedure done. And it's just helpful."

That's what keeps me going, cause otherwise I want to tear out my hair with all the tongue-tie crap. I just want to tear out my hair.

Anik: I feel the same way with, with all of the torticollis, just misinformation and obviously they're really connected. Thank you very much. That was great.

Dr H: Nice to be of help.

Anik: Thank you so much. It was nice meeting you, and I'll be in touch.

If you feel your baby may be suffering torticollis, I have a course which will give you the skills and advice you need - “How to Fully Resolve Torticollis in Your Baby”