Booby Traps Series: “Crying helps you get an appointment faster.” Was your baby tongue tied?

This post is the 57th in a series on Booby Traps, made possible by the generous support of Motherlove Herbal Company.

“Cry when you get the receptionist on the phone.  Just tell her that you really need to see the doctor as soon as possible, and then start crying.”

That’s the advice I used to give mothers in my area who were having trouble getting an appointment to see the only doctor who would clip a tight frenulum (tongue tie).   It wasn’t an attempt to deceive the doctor – these mothers had cried with me -  but to help the mom convey how desperate she was to get care quickly.

And the fact that I felt mothers needed to resort to losing it on the phone is a sign of a problem.  While health care providers have all heard of tongue tie (tight lingual frenulum, or ankyloglossia), getting one to recognize its impact on breastfeeding or – most importantly – finding a provider who can treat one in a timely manner can be very challenging.  We wrote about this in 2010, and many of you responded with your stories: Booby Trap:  Docs Who Won’t Snip Tongue-Tie, Thousands of Breastfeeding Moms & Babies Suffer.

In the case of mothers in my community, it could take over a week to get an appointment with the physician who, at the time, was the only one who would deal with a tongue tie.

I remember helping one mother who was in excruciating pain while breastfeeding her two week-old tongue tied baby.  When she called the doctor’s office and heard that it would take over a week to get an appointment, she did a quick calculation:

A minimum of 8 feedings/day x 8 days of waiting for the appointment = 64 hideously painful feedings with a miserable baby.  I quit.

She didn’t quit (I called and pleaded for an appointment the next day), and once her baby’s frenulum was clipped and her baby re-learned how to use his tongue breastfeeding was smooth sailing right into toddlerhood.

But what about moms who can’t find a doctor who will 1) acknowledge that a tight frenulum is causing breastfeeding difficulty, and 2) treat it with a fretonomy (if that’s what the parents choose)?

In the days before bottle feeding became the norm, fretonomy (clipping a tight frenulum) was done routinely.  It fell out of favor starting in the 1940′s as bottle feeding became more common, according to Catherine Watson Genna, author of Supporting Sucking Skills in Breastfeeding Infants.

But it’s 2012.  Forty years after breastfeeding rates began to climb.  And we’re stuck searching and for providers who can help with a condition that affects up to 13% of all babies?

And it’s even more difficult to get care, or even acknowledgement, for a posterior tongue tie, which is less represented in the literature.  In my area, mothers used to have to leave the state to get a posterior tongue tie treated – and pay for out out of pocket.

One hospital where I worked dealt with tongue ties which interfered with breastfeeding before families left the hospital.  No one went home with breastfeeding problems related to a tongue tie unless they chose not to have it treated.

Another hospital where I worked didn’t treat tongue tie, and those mothers could spend weeks in pain, fighting the understandable urge to stop breastfeeding, until they could get appropriate diagnosis and care.  Undoubtedly, some weaned long before they had planned.  And as became painfully clear to me the more mothers I saw, the longer it took to get care, the longer the road to pain-free feeding because the babies had to re-learn how to breastfeed using the new range of motion of their tongues.

Just in case you need research to prove how big of an impact tongue ties have on breastfeeding (and if you had a baby with one I’m sure you don’t), research has shown that mothers with babies who have tongue ties are three times as likely as other mothers to wean in the first week.

A recent study has also proven, through a clever study design, that fretonomies do significantly reduce breastfeeding pain for mothers of tongue tied babies.  In this study, published in Pediatrics last year, a group of babies who all had significant tongue ties and whose mothers were having breastfeeding pain were assigned to either have their frenula clipped or have a “sham procedure.”  The result:  The mothers in the “sham” group had no improvement in pain, the mothers in the “clipping” group did.  In fact, by two weeks of age all but one of the mothers in the “sham” group had opted to have the procedure done.

I think that care for tongue tie is slowly improving.  In my area there are now several providers who will treat tongue ties, and mothers no longer need to leave the state to get care for a posterior tongue tie.  But until every moms has access to a provider who can swiftly diagnose and treat all forms of tongue tie, it remains a significant Booby Trap.

Here are a few of my favorite resources for moms on tongue tie and breastfeeding:

Tongue-tie doesn’t just interfere with breastfeeding, but can also cause speech impediments which are expensive, time-consuming to treat and can be emotionally damaging for children and a stress on families.  It’s another example of where excellent breastfeeding care can save money, time and heartache.

Did you have trouble getting a tongue-tie treated?



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8 Responses to Booby Traps Series: “Crying helps you get an appointment faster.” Was your baby tongue tied?

  1. Robin Kaplan says:

    I absolutely recommend the same thing. Sometimes my moms are told that they will have to wait over 2 weeks to see an ENT for a second opinion on a frenotomy. I always recommend for them to call back and use the tears and say that their baby is NOT EATING and needs to be seen immediately. And if their baby has lost a lot of weight, we definitely throw that in as well. Also, I have been known, on occasion, to call on the Dr’s line to get a mom an earlier appt. WE’re all in it together and this appointment could be life changing for a mom and baby’s breastfeeding relationship!

  2. GradBaby says:

    My boy had a posterior tongue tie. It took 8 weeks of trial and error to finally get it checked out/clipped. I don’t blame anyone – I was at a baby-friendly hospital, worked with hospital LCs in person twice and on the phone another time. Since it was so posterior no one could exactly pinpoint it as the cause for painful feeding and the resulting side effects (thrush, vasospasms, mastitis). We finally saw the expert in the area and she quickly took care of it, with only a few tears from my 2mo old son. It was mostly covered by insurance to–$75 bucks is worth it to save money on formula, keep my son healthy breastfeeding, and finally stop my own pain!

  3. laura Hensley says:

    I saw a lactation consultant at six weeks cause I saw a tonue tie in my son. As a dental Hygienist I was pretty sure I knew what was going on. The consultant said his tongue tie was not latch affecting. He was super gassy, spit up lots and often and pulled off the breast frequently. She diagnosed him with reflux. I was not happy with the result so I made an appt with an ENT. That took 4 weeks. When he was 10 weeks we had the eNT appt and he said he had a classic tongue tie and sniped the frenulum that day. He was much happier and nursed much better. We are still nursing strong at 18 months.

  4. Abbycentral says:

    It took 8 weeks, 6 of those working with a reputed LC, to get a posterior tongue-tie diagnosed. I was able to schedule the frenotomy very quickly, thankfully, but my insurance does not cover the procedure (it goes toward my deductible). 8 months later we’re still paying it off, but we are still breastfeeding! It’s worth it to me. My baby’s health, MY health and comfort, and the bond we share is incredible. Can you write a post on the benefits of cranial sacral treatments? That helped us immensely as well.

  5. Kristen says:

    I worked with a lactation consultant that was also a pediatrician for 3 months before my son’s upper labial tie and posterior tongue tie were diagnosed. We tried everything there was to try to help my severe burning nipple pain that radiated deep into my breasts. I was convinced I had a severe intraductal yeast infection until I read about upper labial ties online. I had had my upper labial frenulum clipped as a teenager as advised by my orthodontist. I got a second opinion from another IBCLC in the office and got an appointment with a pediatric ENT who diagnosed both ties. After a very quick surgery at a children’s hospital my baby was able to nurse in the recovery room. I have been pain free ever since. My baby was able to nurse more efficiently and was finally satisfied. I was able to cut way down on formula supplements (he had had weight gain issues due to my low supply which I believe was caused by his tongue tie and my issue with retained placental fragments that necessitated a D&C). We are now still happily nursing as almost 13 months. I am so happy I stuck with it and continued to search for an answer.

  6. Dawn Star Sarahs-Borchelt says:

    My younger brother had a toungue-tie as an infant, which our family doctor referred to a specialist to have clipped. My mother has always said that after having seen it done she would have just done it herself with sterilized scissors if she’d had another child with a toungue tie! It really is a simple proceedure (for most simple toungue ties)!

  7. Shannon B says:

    My DS was TT and we did have to leave the state (CT) and pay out of pocket ($500)to get his PTT and upper lip tie properly diagnosed and treated. I also think that a lot of moms are finding that a pediatric dentist is the way to go. Dr. Kotlow in Albany treated DS quickly and almost painlessly at 5 weeks with a laser. It took a few weeks for DS to get the hang of his new tongue, but by 8 1/2 weeks we were smooth sailing. If you suspect TT or ULT, please visit the FB group “Tongue Tied Babies Support Group”. They are SO knowledgable and SUCH a big help when no one else will listen!

  8. Lynette says:

    My now 11 month old baby was tongue-tied. It was five weeks before it was recognized and clipped, though we had a knowledgable and helpful midwife, and also saw a lactation consultant and talked with other public health nurses and lactation consultants. We finally drove to the Dr. Jack Newman clinic in Toronto for help. Within two days, he was finally gulping milk that he had been working so hard for and hardly getting. The pain for me went away almost instantly after the procedure. It was definitely worth the effort it took to figure this out. I could see how much easier it would have been to start bottle feeding after such struggles. Thankfully, he’s my sixth baby. I had such great breastfeeding experiences with the others, and I was going to make sure he got the same!!!

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