Friday, September 30, 2011

What every doula should know about breastfeeding: Tip #4: Tongue ties

Preface: Often as a doula, before I became an LC, I would encounter situations in the hours after the baby was born, or at postpartum visits, where I wasn't quite sure what to suggest; or looking back, I realize I could have done something differently. I've decided to share some tips with other doulas about things that I wish I had known long ago! Today is Tip #4: Tongue-ties.

Let's start right off with an explanation of why I am even talking to doulas about tongue ties. Should a doula diagnose a tongue tie? NO! Should a doula even be the one to assess for a tongue tie? NO! So why even discuss tongue ties??

I am including this piece on tongue tie because the lack of education among medical providers and even some LCs about tongue tie makes it incredibly hard for mothers to even find out that their baby has a tongue tie, and often even harder to find someone to treat it. Yet tongue ties can cause serious breastfeeding problems including maternal nipple pain/trauma, poor milk transfer by the baby leading to low weight gain in the baby and low supply in the mother, and may also be related to problems related to feeding such as reflux and unwillingness to start solids. I hear stories of women going to multiple LCs, pediatricians, etc. with these issues and having the tie totally missed...sometimes for months.

As with other breastfeeding issues, the lack of awareness of tongue means there is a serious gap in terms of providing good care for breastfeeding mothers & babies. So while we're waiting for all health care providers to get educated about tongue ties, if the doula is going to be the one person to notice a possible tongue tie, I'll take it!

WHAT is a tongue tie, and WHY look for it?

A tongue tie (the medical term for tongue tie is "ankyloglossia") is when the frenulum, the thin band of skin under the tongue, is very close to the front of the baby's tongue and/or very tight. This prevents the baby from properly sticking out and/or lifting the tongue. The tongue is a crucial part of breastfeeding! It helps stabilize the breast in the baby's mouth, and moves in a wavelike pattern to generate suction and move milk from the breast into the baby's mouth. It also moves the milk to the back of the mouth to be swallowed. To do this, the tongue needs to be able to stick out past the baby's lower gumline, cup the breast, and elevate up towards the roof of the mouth. A tongue tie can impair one or more of these functions, making it hard for the baby to nurse comfortably and effectively.

A tongue tie may cause pain for the mother because the baby can't extend the tongue past the gumline, so it ends up biting the nipple; or because the tongue is restricted, it keeps humping up in back and bumping the end of her nipple. It may keep the baby from moving milk out of the breast effectively, because it cannot latch properly. This can lead to a decreased milk supply because the mother's breasts are not being drained sufficiently. The baby may become very fussy at the breast and even refuse to latch at all because it is so difficult to latch and remove milk. Or tongue tie may cause other issues down the line, or it may cause no issues at all! Next I'll talk about when to look out for tongue tie, and what to do if you suspect a baby is tongue tied.

A tongue tie can be easily and fairly painlessly clipped, especially if it is done in the newborn period. The clip is usually done by a pediatrician, ear-nose-throat (ENT) doctor, family practitioner, midwife, or dentist. I want to emphasize how simple, quick, and no-fuss this procedure can be! I find that people often find the idea of clipping off-putting at first. (I call it the "scissors in a baby's mouth" problem. I need a new name for the problem.) When the parents actually see it done, they are often surprised by how insignificant it seems to them AND to the baby. I will talk some more below about helping parents think through whether or not to clip.

WHEN to look out for tongue tie:

As an LC, I look under every single baby's tongue, because that's my job! As the doula, it is not your job to look for or assess for tongue tie. A baby doesn't need a tongue tie assessment before it latches on the first time, nor do you need to make a routine part of your doula services to check any client's baby for tongue tie if they are nursing well.

What about the client's baby who is having trouble? Ideally, all babies who are having trouble nursing have had their tongues checked by a knowledgeable LC and/or pediatrician. However, as I noted above I am writing this post because not all your doula clients will have access to those providers. They may even have noticed something different about the baby's tongue and been told by a health professional "Oh, it's not a big deal" or "That has nothing to do with it".

As the doula, if you know your client is having trouble nursing and the baby has NOT been checked out by someone knowledgeable, it is worth taking a look. Or if you are holding the baby or looking at the baby's mouth and notice it might be tongue tied, it is worth looking more closely. You can be the "breastfeeding first responder" to identify a possible tongue tie and get the mother to advanced help. My post on referring to advanced care is here. You may need to do some extra research to help the mother identify good local resources for tongue tie. Use your fellow doulas as resources, call La Leche League, and network with local LCs to help your client.

HOW to look for tongue tie:

When it comes to learning to identify tongue ties, a picture is worth a thousand words; and many pictures are worth a whole blog post! I'm not going to include a single picture of tongue tie here - that's so that no one looks at one photo and thinks "Oh, that's what a tongue tie looks like". Tongue ties can present in many different ways; you should see many to get a feel for them. To learn more about different presentations of tongue tie I highly recommend the following resources:

Clip It, a resource for helping identify tongue ties and to teach medical professionals how to do clips. They have a number of tongue tie photos and videos, and a long and informative PowerPoint presentation

Dr. Lawrence Kotlow's website has a number of his publications that have photos of tongue tie, including a presentation for health professionals and this handout for parents.

Cathy Watson Genna, IBCLC extraordinaire, has a fantastic book called "Supporting Sucking Skills in Breastfeeding Infants". It's probably not at your local library (or even your local medical library, although you never know) but parts of it, including many tongue tie photos, are available on Google Books - go to chapter 8. (And if you are interested in learning more about a wide range of sucking/feeding skills in breastfeeding infants, this book is an amazing investment! Although I hear there's a new edition coming soon, so you might want to wait to get it.)

Keep looking! If you find more tongue tie resources, look at those photos too. The more pictures you see, the more you'll be able to notice normal vs. abnormal frenulums. Take a close look when you find pictures of posterior frenulums - they are the hardest to see and so frequently get missed.

And once you're starting to notice tongue ties? Remember, even if you see what seems to be a very obvious tongue tie, it's probably not helpful to your client to hear from you: "Your baby is tongue tied, I've found your problem" - nor is it in your doula scope of practice. Your role is to let her know what you see, and provide her with the education and resources she needs to make the right decision for herself and her baby. For example: "It looks like the skin under her tongue - her frenulum - is tight, and is making it hard for her to lift her tongue. I know that can sometimes cause breastfeeding problems, and a lactation consultant can help diagnose it. Would you like the contact information for someone who is very experienced with this issue?" Again, you should have a good list of local breastfeeding resources that can serve as referrals if you suspect tongue tie.

And it is DEFINITELY not the doula's role to rule out a tongue tie! You don't want your clients saying "Oh, my doula looked at the baby's tongue and said it was fine." If your client has unresolved breastfeeding issues, she should be in a good lactation consultant's office saying, "My doula is not sure what the problem is, but she helped me all she could and referred me to you."

I will also emphasize that tongue ties do NOT always cause problems. When I had just learned about tongue ties, I had a doula client whose baby was tongue tied. I noticed it within 15 minutes of the birth - the baby could extend his tongue over his lower lip, but it was clearly heart-shaped. I think it was the first tongue tie I ever identified by myself, so I was on high alert.

I could have leapt up on a chair and yelled "Call the doctor! Get that sucker clipped!!" I am proud to say I did not! I mentioned it when I saw it, and checked in with her several times during the first nursing to make sure they had a good latch and that she was comfortable. Later, I talked with her about the possibility of pain with nursing or issues with milk supply/weight gain, just as an FYI to keep an eye out for those issues; she did keep an eye out, and saw zero problems. Since then I have worked with other tongue tied babies who had no problems nursing. Some tongue ties are functional; even some babies with what appear to be fairly severe tongue ties may "fit" with their mother's nipple so that it is not an issue. If you see a tie, you can inform your clients in a way that doesn't make them overly anxious, and always have more information on hand so they can find out more if they are curious.

WHAT happens if a tongue tie is diagnosed?

If your client's baby has a tongue tie diagnosed, there are several things the parents can choose to do. Most parents do not say "Yes! Clip it!" immediately; and most doula clients, being informed consumers of healthcare, do want to spend at least a short amount of time evaluating the risks and benefits of a clipping (which goes by many different medical terms, including "frenotomy", "frenulotomy", and "frenuloplasty").

You can be available to help your clients think through the options. Help them think through what questions to ask: How long does the procedure take? What happens during the clipping? What will the baby experience? What are the benefits for breastfeeding? What are other possible benefits? What are the risks? Can the parents be present for the procedure? Will the baby be put to breast immediately after the procedure? (Most professionals who clip recommend this.) What does the provider recommend if they decide not to clip? If they change their minds later about clipping, what are the options?

If there are no or mild issues, and they are willing to see if those issues resolve on their own, the parents can decide not to clip. If they are unsure, you might help them think through options like "We'll revisit the idea if the issues are still here in [X] weeks" or "We'll clip if the baby does not gain [X amount of weight] by next Friday." A lactation consultant can help refine the latch and find positions to help the baby nurse better.

If they would like to go ahead and do the clipping, you can be a resource to help them find someone to do the clipping. As I mentioned above, those can be health professionals from midwives to ENTs to dentists. Posterior tongue ties, in particular, are often the most challenging to find a provider to clip for; the parents may need to travel several hours to get to someone familiar and experienced with posterior ties. Help your clients get past stonewalling like "Yes, your baby is tongue tied, but no one will clip it" - this is untrue and denies the parents the opportunity to pursue appropriate care for their baby.

Below, is a video of tongue tie evaluation, clipping, and breastfeeding after if you're interested in learning more.

You can also see Dr. Jim Sears discuss tongue tie on "The Doctors" (sorry, can't embed.)
Please feel free to comment with other resources and personal experiences!


Kristi said...

My daughter went 10 years before it was realized she was tongue tied. Had a knowledgeable LC, RN, pediatrician, or my doula in the hospital I had had her at listened when I told them I was having problems, I might've been able to nurse her. We didn't know. Last year, I had another tongue tie baby. When *he* was diagnosed (and, also, wasn't able to nurse), the pieces started fitting together. For my daughter, it was too late. She's 10 now, and her tongue tie has stretched to where it is not so much a problem, but she has been left with speech difficulties. For my son, we were able to get him clipped before he started speaking, but too late to nurse him.

I hope and pray that everyone involved in birth care and breastfeeding becomes educated on tongue tie. It's something so simple, that can really, truly make the difference between a baby breastfeeding, and a baby going on the bottle.

Analytical Armadillo said...

Great post! I also try to provide information as to what other areas of health their child's tongue tie may impact - wind/colic/reflux, speech, solids etc and potentially longer term issues linked with a restricted frenulum. Often parents don't link the severe gastric issues with the mouth and how things go in. Dealing with a TT is FAR kinder at 5 days than as an older child/teenager.

Rebecca said...

@Kristi: I am so sorry you went through all that. I also hope that everyone becomes educated in tongue tie! Thank you for speaking up to make more people aware.

@Armadillo: I tread more lightly on those areas if parents ask, since there is debate about impacts on speech, and I don't know that there's solid research evidence on reflux etc. That's why I say it "may" be related to those issues, and tell parents that there is some anecdotal evidence but that the research is not out there yet (while the evidence is mounting for the effectiveness of clipping).

Anonymous said...

Great information. We noticed my son had TT when he was first born, but everyone dismissed our concerns, by the time someone finally shared our concerns he was 14 months old and need to have full-blown surgery to correct it (he was never able to even lift his tongue, it was fused from tip to base) He is now three and still has trouble using his tongue properly,he never was able to even lick an ice-cream untill he was two causing a very noticeable lisp, you can see his wrong tongue placement as he never learnt to manipulate it untill he was toddler, now speech therapy is needed