How to be the Coach of your Own Team

I began this
mini-series with a post called “Assembling the Dream Team to Treat Your
Tongue-tied Infant”, in which we sought to dispel the myth that tongue ties are
treated simply and easily through a frenectomy surgery alone. In reality, a
large majority of the time you need to surround yourself with the right team of
experts to help prepare your child for surgery, to address pressing breastfeeding
issues and establish good latching habits, and to minimize recovery time and
maximize the outcome of the procedure.

Each subsequent post
has highlighted the roles played in successful frenectomies by IBCLCs,
bodyworkers, and functional medicine pediatricians, respectively. While not
every case will require the full assembly of this “dream team”, the IBCLC
stands out as the “quarterback” who acts as a liaison between parents,
surgeons, and everyone else involved in the tongue-tie treatment. However, the
most important member of this team has yet to be discussed–you, the parent!

Today, I’ll discuss what it means to be an effective “coach”, based on my experience advocating for countless patients in my own practice over the years.

Is it really tongue tie?
They say that when the only tool you have is a hammer, every problem looks like a nail. In my experience, many surgeons will take the same approach with symptoms which present as tongue tie. And unfortunately, this leads to a lot of botched or even completely unnecessary frenectomies!

Surgery is rarely
the silver bullet it’s advertised to be for treating connective tissue issues
like tongue tie. It’s therefore critically important for medical professionals
to acknowledge the limits of their expertise, and to build a multidisciplinary
referral network in order to best diagnose and treat their patients. Here’s an
example of how I handle uncertainty in my own practice:

I once had a mom
come to me with a child who had been born extremely preterm, at just 23 weeks.
The newborn had spent considerable time intubated, then put onto machine after
machine; intervention after intervention. To be sure, these measures helped
ensure baby’s survival, but they weren’t without consequence.

While mom and baby
were able to breastfeed, there were still some challenges present. The infant’s
palate and airway had suffered some deformation due to long-term intubation.
Furthermore, there were myriad tensions throughout their face, jaw and neck.

Having read up on
her child’s symptoms, the mother suspected tongue tie, and sought out an
official diagnosis. She met with multiple providers, but had no direction or
clear sense of what to do. It was only after meeting with a lone dissenting
voice, who acknowledged the myriad unknowns and the possibility of tongue
tie, that she was referred to my practice.

Once I’d examined
the patient, I was also unable to give a firm diagnosis of tongue tie, and was
thus unwilling to schedule the frenectomy the mom was so certain her baby needed.
There were just too many areas suffering excess tension to confidently declare
a restricted frenum as the culprit (as it isn’t always super obvious when other
factors and significant tensions are present). Instead of surgery, I
recommended we first try to alleviate some of this tension through osteopathic
care, and to see where that landed us.

Towards this end, I
referred this patient to an osteopath, as well as an IBCLC with certifications
in tummy time and intra-oral mouth work. Before leaving my office, I also
showed the mother some preliminary exercises she could do to get her baby
accustomed to mouth work, and to release some of the tension present.

After meeting with
my referrals, it became clear that no further intervention would be necessary,
saving this sweet infant the pain of surgery while still yielding a positive
health outcome. But, it could have easily not worked out so well!

There are many days when Mom’s self refer to me after being told or suspecting themselves that their baby has a tongue tie.  They have not had any lactation support, any bodywork, and many are hoping I will tell them “yes, there is a tongue tie” and that me releasing it will be the solution to all the troubles they are suffering.  Sometimes it is present, we help with our team approach, and all is well.  Sometimes it is there, but they aren’t ready, Mom and Baby need some pre-work, and that can be hard for a Mom to accept.  Sometimes it isn’t at all a tongue tie, but at least we can help the mom have a holistic, minimally invasive approach and set her off on the road to help, and that also feels good.

Who determines the best course of treatment?
The unfortunate truth is that most clinicians lack the training (because it is still not taught in medical or dental school or residency programs on the whole) they need to discern tongue tie from among the myriad other connective tissue issues. What’s more, most haven’t taken the time to build a network of specialists who can fill in these knowledge gaps in both diagnosing and treating tensions. The lesson here: beware quick “yes” or “no” answers to the question of whether tongue tie is present, and ensure that “I’m not sure” is followed up by referrals to people who have the qualifications to render a more accurate appraisal. 

It may sound strange for a surgeon to advocate for surgery only as a measure of last resort, but I’m not the only one! Dr. Richard Baxter (author of “Tongue-Tied: How a Tiny String Under the Tongue Impacts Nursing, Speech, Feeding, and More”) works with a team of in-house specialists, offering tongue-tied patients many avenues of treatment and diagnosis. Dr. Bobby Ghaheri is another high-profile example–he won’t even let you book an appointment for surgery unless you’ve visited and worked with an IBCLC first. Even IBCLCs themselves, like the “tongue-tie doula” Jessica Altemara, maintain a close interdisciplinary network.

While each of these
clinicians have their own way of doing things, the common thread is the prioritization
of the patient’s needs above all else. This can’t be taken for granted; after
all, clinics are businesses, and there is a strong financial incentive to push
for larger volumes of surgeries. Some providers may even advertise a nominal
relationship with an IBCLC simply to capitalize on the growing awareness of
their starring role in treating tongue tie, although all they really have is
someone they can set you up with to pay for their services, rather than true,
in-house, part of the procedure, help before and after surgery.

The point is, it’s
difficult for a given clinician to diagnose tongue tie on their own, and even
more unlikely that a single vector of treatment will completely solve the
problem. If your first point of contact regarding your child’s possible tongue
tie is a pediatrician, there’s a good chance they’ll refer you directly to a
surgeon for a frenectomy (or more commonly, an ENT). To use the football
analogy again, it’s like going straight for a field goal when it makes sense to
gain some yards for a stronger shot at a touchdown.

A good quarterback will know better. But, how do you choose your quarterback?

How to best advocate for the health of your baby
For most parents, pediatricians are first-call personnel when something is wrong with their baby’s health. Unfortunately, most doctors (including pediatricians) never take a single class during their training focusing on the mother/baby dyad. Well-intentioned as they may be, pediatricians thus typically lack sufficient education on the matter to make the right recommendations and referrals.  If you are going to solicit the help of your pediatrician, let them know you are aware they don’t get much training on the dyad and breastfeeding.  Ask them where they got their training to give the advice they are giving?  If they or any doctor is saying there is or is not a tongue tie, ask them what protocol or assessment tool they are using to make their diagnosis and where they got the continuing education to make a hands-on assessment and differential diagnosis.  Of course, you do not want to be argumentative and you want to be respectful in how you ask these questions, but at the end of the day, you deserve to know.  I am weary myself of parents saying “the ENT or pediatrician told me there is no tongue tie.”   In the next sentence most say that “No, they didn’t put their fingers in the mouth or do much more than a quick peek.”  I just wrote a paper for the American Academy of Pediatric Dentistry’s Journal called “Pediatric Dentistry Today” about a child whose life was completely transformed by a simple tongue tie procedure.  In it, I appealed to my colleagues.  If they are using the antiquated “open up and stick your tongue out” assessment from 50 years ago, KNOW that there are now validated protocols and accurate tools for assessment.  It is my prayer that one day they will be taught in medical school and dental school, and that like Brazil, the US will have a law that all infants must have their tongues inspected in the first 48 hours of life.  The negative consequences over a lifetime of tongue tie are vast.  If the government had to pay for our healthcare, like Brazil, then we would have the law in place tomorrow!

Therefore, I
encourage parents to do their research, and shop around to assemble the right
team of medical professionals who understand acutely the challenges you and
your baby face. That said, it’s important not to succumb to hearsay,
convenience or perverse financial incentives which may cause you to take the
wrong course of action.

Towards this end,
beware the myriad Facebook groups not directly administered by or affiliated
with medical professionals. Opinion posts in these communities often lack
significant medical education, and can be fraught with emotionality. Similarly,
many parents may simply advocate for the best treatment covered under their
insurance plans, rather than the best option for you specifically. I
have had more than one angry dad in my office who already had a procedure that
cost a lot in the end, thinking because the Pediatrician said go to this ENT
and that ENT was covered on medical insurance all would be good…only to find
out they just snipped the front part of the frenum and they baby needed the
rest of it released.  You may live near
Dr. Ghaheri or another well known ENT, who does many every day, who you can
seek out.  You may live near a great
Pediatric Dentist with an excellent, well-known reputation who you can seek
out.  Wherever you live and where ever
you go, ask how many they do per day/week? 
How many years have they been doing this procedure?  How often do they have to re-treat?  Please, even if money is tight, don’t
compromise on this, go to someone who is tongue-tie savvy, with a good
reputation and a lot of experience.  You
and your baby deserve it!

As I’ve said before, a well-trained IBCLC is
usually your best first point of contact for breastfeeding issues with possible
roots in tongue tie. If your baby is less than 6 months, even if your
pediatrician recommends an SLP, start with a tongue tie IBCLC.  It’s cheaper and they are way better (if they
are a tongue tie savvy provider…ASK!!) 
However, it can be any clinician (including IBCLCs, chiropractors,
speech language pathologists, dentists, and even some pediatricians) who meets
ALL the following criteria:

  • Has worked extensively with pre-crawling infants – After working with thousands of patients, your ideal quarterback will have firsthand knowledge of what normal vs abnormal looks like with regards to baby’s tongue and mouth, mom’s nipple, the latch between the two, and the positioning of the mom/baby dyad.
  • Works within a team or robust referral network – Tying into the first point, an experienced provider will have an extensive “rolodex” of referrals, and be able to provide patients with a wide range of options to best suit their unique situation (including both physiological and financial concerns). Otherwise, they’ll work in house with a team of specialists specifically assembled for treating cases like yours. Lone-wolf providers should send up red flags for you!
  • Has a good reputation with other providers – This is almost self-explanatory, but it’s important to only take referrals whose results have been closely monitored by expert eyes. Even if your pediatrician or dentist doesn’t have extensive training with breastfeeding and tongue tie, they may know someone who does, even if just by reputation.

Why isn’t tongue tie a more mainstream topic?
It can be easy to meet any claims that your pediatrician or general practitioner might not have all the answers with suspicion. After all, pseudoscience has proliferated on social media and throughout the Internet, challenging presuppositions about who to trust with your health by any means necessary.

Unfortunately, separating truth from special interest can be difficult, and I would never ask you to simply appeal to the most vocal authority on the matter. Instead, consider that it takes an average of 17 years for new medical evidence to filter into mainstream practice.

What this means is that specialists dealing with a problem every day can have accurately identified the issue and devised effective means to treat it long before such methods are taught in medical academia. One need only recall the “doctor recommended” cigarette advertisements between the 1930’s and 1950’s to realize how long it took what we now consider common sense to gain widespread acceptance among the medical community.

Something similar is happening with the Back to Sleep initiative. While we have seen an overall decrease in SIDS, we’ve also seen a 600% increase in positional plagiocephaly (links to a direct download of the study). This disparity in results has caused many medical professionals, like myself, to question the blanket efficacy of the campaign as a whole, and instead seek to break down which specific recommendations are effective in fighting SIDS, and which recommendations actually cause collateral damage to the baby. This is not a fringe topic devoid of evidence, it is simply on the forefront of our collective understanding.

The mother/baby dyad
is also well understood, but not yet on a wide enough scale that your average
pediatrician can make the best recommendations and referrals to any problems
present. Due to the (rightfully) skeptical nature of medical science, it will
take a generational change for this knowledge to hit mainstream–but it is coming.

As stalwarts of older methods retire; as political alliances shift; and as these changes begin to reshape academic curricula, we will begin to see a sea change in how we view pregnancy, birth, breastfeeding, connective tissue tensions and torsions, baby containers, and so much more. And, it will only come as a benefit to your child’s health!

In closing
I’ve covered a lot of ground in this 8-part mini-series, much of which challenges conventional understanding of the mother/baby dyad. In closing, I’d like to once again reiterate the importance of educating yourself to better advocate for the health of your child.

This is not to say medical professionals do not have your best interests at heart–the vast majority do–just that most practitioners and clinicians do not currently have the training they need to understand your situation. The exceptions tend to come from doctors who have perhaps had their own difficult births or breastfeeding troubles, which spurred them to perform their own research beyond the standard curriculum, and/or seek out continuing education on the topic.

Ultimately, it’s up to you to draft an all-star team to treat your tongue-tied infant. You’ll want to start by liaising with professionals who work closely and often with the problems your baby is experiencing; who work within a multidisciplinary team or maintain a strong referral network; and who have a great reputation for producing results. This can be an IBCLC, Speech Language Pathologist, Chiropractor, Osteopath, ENT, Pediatric Dentist, or anyone else who regularly deals with pre-crawling infants. This person will be your quarterback and help you decide a holistic course of action to secure the best health outcome for your baby. To be sure, frenectomies are an effective component of treating tongue tie, but they’re no panacea, especially if recommended without considering the myriad other factors that can come i

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