A recent experience from my work follows.
Baby at 10% below birth weight at 2wk check up.  Supplement ordered by dr.  Mom sees us next day due to baby's inability to take bottle, although she perceived it as baby not liking the taste of formula.  I describe tongue as thick and blocky--with heavy white coating on surface of tongue--(because tongue never scraped against the palate -imo).  Mom appeared to have a low supply and breasts so small that she said even the smallest breastshield was too big.  
I began to think this was a yes...but...type of mom who would have an excuse as to why anything I'd suggest would fail...but I brought out the SNS and baby took 2 oz at breast.  The baby relaxed and mom was concerned because she had never seen the baby without clenched fists.  
Moms concern with 'lethargy' promoted her to visit the ER and get admitted.  This gave us the opportunity to bring in ENT, and SP path in addition to the Ped.  Each professional dismissed the previous professional's diagnosis---not tongue tie   not a motor problem a sensory problem,    tight frenulum but no need to clip...you get the idea.  The parents were totally confused and I don't think we impressed any of our fellow professionals with our observations.
Which bring me to this request....DEAR, darling Lisa Morasco--work your magic and publish something that we can use in practice!  The time has come! :) Forever grateful for your work.
Polly Kocher, BS, IBCLC




Date:    Wed, 27 Apr 2011 19:15:02 -0700
From:    Lisa Marasco IBCLC <[log in to unmask]>
Subject: Re: 

Laura posted on her concerns regarding parents being told that their child will have speech problems.  Of *course* there is no certainty. But there are no guarantees that there won't be problems, either.  Two points:

I had a mom with a newborn with breastfeeding problems. He had a clear anterior tie and the recommendation was easy to make. I accompanied them to the treating pediatrician and photographed the procedure. I remember distinctly afterwards asking the mom what differences she felt on first latch, and she said "it's better." Not it's great, but better. I remember being a little disappointed and worried that I had represented the potential improvement too highly.  They went on to breastfeed uneventfully for a year.
But when the little guy was 16 mos, she called me and said that she was sure he was still tongue-tied and that he was trying to talk and was becoming very frustrated. The ped didn't know what to say so I asked her to come back and let me take a look. Well, you could clearly see the tongue being held down. When I went back to my old photos, it then became clear to me that there was a whole submucousal portion that we had not recognized as still being present after the clipping of the anterior web. Tongue elevation was terrible and speech was affected. I made an immediate recommendation for a follow-up with an ENT.

My sister had fraternal twins four years ago, and lots of breastfeeding pain. Both babies appeared to have posterior tongue restriction, but because it was not super obvious and she didn't live in my area, I didn't press it.
Feeding pain persisted for 6 mos and longer. Now the twins are 4 and one has perfectly fine tongue mobility and speech, but the little boy has already had speech therapy. When I ask him to lift his tongue and demonstrate the action to him, he stares at me with a blank, puzzled expression because he cannot fathom the action of lifting his tongue. How I wish now that I would have been more confident to recommend treatment, because now dad is resistant to the idea.  I could not have predicted at the time that one would end up with speech concerns and the other not, but I do know that my sister suffered for a long time.

When I developed a handout for parents a few years back, I asked a dentist, an orthodontist and an ENT to review it and allow me to publish their endorsement of what I wrote so that when docs inevitably saw it, they would not think that I was a lone ranger on this issue. I also wanted to get a speech therapist and called my local elementary school to talk to their SP.
I asked her how often she saw tongue-tie in children with speech issues, and she responded, "almost never."  I was shocked. I have had countless families in my office with tongue mobility restricted babies and I'm watching and listening to the parents talk and seeing a tongue that does not lift, hearing subtle or not so subtle speech problems. I hear about the siblings in speech therapy, the brothers and uncles and cousins (more often boys than
girls) who can't roll  their r's, who were in therapy, who had problems, and who often also could not breastfeeding successfully. Just this past month I had a mom with serious speech problems despite years of therapy; her brother had the same speech problems but improved more than she did. Of course mom's tongue did not have full mobility, and I am certain, given the genetics,
that neither did the brother's.   I considered how many of these children
and people have passed through the system with the etiology of their feeding and speech problems never identified. It became clear to me that the SP profession in general was not much higher on the ankyloglossia learning curve than the pediatricians, and thus likely reinforced each other's opinions on the topic.  It was an eye-opening moment.

I constantly wrestle with what to tell each parent when baby's sucking appears to be impaired by restricted tongue mobility.  All I can do is talk about probabilities without any guarantees. Do we play it conservatively and wait to see if they fail? Do we advocate treating to eliminate the possible risks? I wish I had a crystal ball to predict how many of these little tongues will grow out and develop sufficient flexibility and how many never will.  I'm still looking to pin down the key findings that may help with this. Meanwhile, we roll the dice daily on which moms will hang in there and which just can't continue in the battle. I look forward to the day that we have knowledgeable cross-disciplinary support to help make decisions. 

Lisa Marasco

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