Booby Trap: Docs Who Won’t Snip Tongue-Tie, Thousands of Breastfeeding Moms & Babies Suffer

A miserable, tongue-tied baby, courtesy of flickr.com

Kudos to the researchers at the University of Florida for drawing attention to a major “Booby Trap” in helping mothers achieve their personal breastfeeding goal, as published online in Pediatrics. Many in the breastfeeding community have known for a long time that an unusually short frenulum, the connective tissue under the tongue, is more common than people realize and can be easily and quickly snipped by credentialed professionals to allow the baby’s tongue to move properly and milk the breast.   If left undiagnosed and untreated, this condition, commonly called “tongue-tie,” can in severe cases result in low weight gain with a great deal of frustration and suffering for the baby, and extreme nipple pain,  mastitis and frustration and agony for the mother.  Contrary to popular belief, not all doctors are permitted to perform this procedure, so it is important to find one that is (see bottom section).

Says Neonatologist Sandra Sullivan, MD in an article from Futurity.org:

“It is called a frenotomy, and it is far simpler than a circumcision, which we do fairly routinely . . . It literally takes longer to fill out the consent form for the procedure than to do the actual procedure itself.”

The tongue motions required to breastfeed are more complex than those required to drink from a bottle (hence the benefits to the baby’s jaw & speech development).  Sullivan explains:

“If you take a bottle with an artificial nipple, there is not a lot a baby has to do to get milk.”

“To get milk out of the breast, they have to make a vacuum and if they cannot get their tongue to the roof of their mouth, they cannot do this. They also need to use their jaw and tongue to move the milk along through the milk ducts in the breast.

“If they just bite on the nipple (like a bottle), first, it hurts (the baby’s mother) a lot and second, it blocks off all those little tubes, which keeps the milk stuck in the breast.”

Isabella Knox, associate professor of pediatrics at the University of Washington says that  4 million babies are born each year, so 40,000 to 100,000 babies are affected by the condition.

“That’s a lot of babies,” Knox says. “I don’t think general pediatrics training gives us a lot of skills in supporting breastfeeding . . .  we don’t really know how to help somebody and for some people it is not always a priority.”

According to Futurity.org, “Sullivan is part of an international organization focused on issues related to tongue ties. She and other members of the group’s screening committee are working to develop a screening tool that would help nurses quickly screen for a tongue tie while assessing the baby after birth.”

“There is not a lot of literature about frenotomy, and there are still a lot of doctors who say, ‘Is this really necessary?’” Sullivan says.

“Whether or not there is an epidemic or whether we ignored tongue ties and are looking for them now, this is something that is coming up more often in nurseries.”

Danielle Rigg, CLC & Co-Founder of Best for Babes, who experienced tongue-tie with her second child  says that “doctors and health care professionals are not only unaware of ankyloglossia or tongue-tie, they often confuse “frenotomy,” which is a very simple, relatively painless and easy to perform procedure for newborns, with “frenectomy,” or “frenuloplasty” a more involved procedure used to free the frenulum in older children and adults who have shown signs of speech and mechanical pathology.  Because of this confusion, it can be hard to find a doctor or health care professional who will perform it.  The other problem, according to Jenny Thomas, MD, IBCLC is that contrary to popular belief, not all doctors (like herself) are allowed to perform the procedure, even if they recognize it and want to fix it.   ”Most area hospitals, clinics and malpractice carriers consider this MORE than a minor office procedure and classify it validly as a surgical procedure, albeit a quick one. That means, for those places, you need surgical credentials (proving you’ve been mentored and have done enough procedures to not get sued). You then get surgical privileges in your institution and then subsequently need increased malpractice insurance,” explains Dr. Thomas.  From what we understand from Dr. Thomas, some hospitals have an ENT (ear, nose & throat doctor) on staff who is educated about tongue-tie and performs all needed procedures, and paying  increased premiums so all doctors can perform them isn’t necessary.  (And then there is a whole debate about whether doctors are over-performing the procedure to make money.)  However, from what we’re hearing from moms, there are plenty of hospitals that don’t have a credentialed doctor performing the procedure, and at those hospitals, moms are up a creek.  To make it worse, some lactation consultants (even IBCLCs) are not experienced in recognizing the condition either, so it’s easily missed.    (On the other hand, we’ve heard of lactation consultants who have, in a pinch, used a sterilized fingernail to slice the frenulum).

Danielle had to track down an oral surgeon, the only one in her area (at that time Montclair, New Jersey) who was willing to do it.   “I went straight from the hospital, and although my daughter was less than two days old, she had already learned painful latching habits and I was already bleeding.  The procedure took less than a minute, there was no blood, my daughter didn’t even cry,” says Danielle.  ”When I tried to thank the surgeon, Dr. Richard Riva of Chatham, New Jersey, he said ”you go nurse that baby, tell me how it feels, and then thank me’.  It immediately felt much better, though as a CLC I knew I would have to work with my daughter to help her re-learn a proper latch before all the pain would go away.  When I expressed my gratitude to Dr. Riva, here were his words of wisdom:

“Every child deserves to have the pleasure of  breastfeeding successfully, and every child deserves the pleasure of licking an ice-cream cone, both of which are aided by this procedure.”

We’d like to add, that every mom deserves to have a positive breastfeeding experience without the trauma of severe nipple pain caused by this condition and other undiagnosed but easily solved breastfeeding issues.  Danielle should not have had to leap through the extra hoop of finding an oral surgeon outside of the hospital.  Best for Babes hopes that the American Academy of Pediatrics will push for every hospital to have a credentialed doctor who can perform the procedure, education on diagnosis as a requirement in the core pediatrics curriculum in medical school, and that the nurses associations will do the same. While they’re at it, they should require doctors to complete at least a week-long training similar to what the Healthy Children Project offers to train certified lactation counselors, and/or work with the Academy of Breastfeeding Medicine to develop a curriculum.  Luckily, pediatricians who are already Fellows of the Academy of Breastfeeding Medicine (look for FABM after their initials, similar to FAAP for Fellow of the American Academy of Pediatrics, and FACOG for Fellow of the American College of Obstetrics & Gynecology) are educated in all things breastfeeding.    We’re sure  our friend and supporter Dr. Ruth Lawrence, Chair of the American Academy of Pediatrics Breastfeeding Section, has been working on this for years.

What can parents do

1.  Get a second opinion. If you suspect your baby has tongue-tie while still in the hospital, ask if there is an ear nose or throat doctor (ENT) on staff who is trained in diagnosing tongue-tie and performing frenotomies.  You may want to get the opinion of a highly recommended IBCLC (you made need to bring someone in from outside the hospital).  Tongue-tie is not a black and white issue and some will see a problem where others have missed it, especially if you don’t have the more easily recognized type 1 or type 2, but the harder to diagnose and less common type 3  (See this Motherwear article about an IBCLC who wasn’t able to diagnose her baby’s tongue-tie).   If you can’t get help from within the hospital, see an ENT in private practice, an oral surgeon, or a dentist.  Read the stories here (scroll down) of moms who have navigated this booby trap.

Earth Mama Angel Baby is a proud sponsor of Best for Babes

2.  Politely and diplomatically educate your pediatrician, and other health care professionals and encourage him/her to be part of the solution.  Many doctors don’t know about breastfeeding issues because they weren’t trained, but when enrolled instead of attacked, can be powerful advocates for change.  Let them know about this awesome resource just for them: www.tonguetieclipit.com.

3. Spread the word to moms. Share this page with any expecting or new mothers.  If we can prevent even one mother and baby from suffering through this unnecessarily, we will be ecstatic!!

4.  Be gentle to mothers who couldn’t breastfeed. There are a lot of mothers out there whose babies were not diagnosed with tongue-tie, suffered miserably, thought they couldn’t produce enough milk, and agonized over their baby’s lack of sufficient weight-gain, blaming themselves or their babies, and quit breastfeeding long before they intended to.   We never judge a mother who quit breastfeeding as “not being committed” because we can not truly stand in her shoes, and most of the time she has been booby-trapped and didn’t know it.

5. Write to the American Academy of Pediatrics, send them a link to this post, and send a copy of your letter to any media contacts, urging them to remove this booby trap.

6.  Be the change. For the last few decades, the focus has been on supplementing babies with formula instead of fixing the problem.  This is going to take work to change, as the formula companies conduct training for health care professionals that teach them how to prey on the fears of mothers that they won’t make enough milk, and will need to supplement with formula, instead of giving them proper medical care.   Sad but true.   Through mainstream marketing and  educational efforts like this blog, our WHO-Code compliant advertising campaign, celebrity interviews, and popular media coverage, we are reaching millions of parents with the information they need to make informed feeding decisions, and achieve their personal breastfeeding goals.   Help us or donate!

7/3 This post was edited to clarify that not all doctors are allowed to snip frenulums.

7/4 Great comment from our Facebook discussion:

Have you experienced this “Booby Trap”?  Have you had any success with educating your doctor or health care professionals?  Let’s hear it!