Are Tongue and Lip Ties Being Overdiagnosed and Overtreated?

Written by Robin Kaplan, M.Ed, IBCLC, Owner of San Diego Breastfeeding Center

That has been the million dollar question of the week.  Since Rachel Cautero published her article in the Atlantic last week about this topic, conversations about tethered oral tissue (TOTs) have had a resurgence of epic proportion.  To discuss this topic, I was interviewed by Meghna Chakrabarti on NPR’s On Point this week. Her interview, entitled To Improve Breastfeeding, Babies Get Their Tongues Clipped.  Is it necessary?, included the Atlantic journalist (Rachel Cautero), a pediatric ENT from John Hopkins (Dr. Jonathan Walsh), and me, an IBCLC from San Diego.  

I encourage you to listen to this interview, as there were many important issues brought up that parents need to hear.  I also encourage you to consider listening through an unbiased lens, as the first 30 minutes are fairly skewed due to the sharing of personal breastfeeding experiences by Meghna and Rachel.  They talk about being informed of their infants’ tongue ties during a very vulnerable early postpartum period and how upsetting this information was to them. They shared how they both decided to stick with breastfeeding, despite significant pain for weeks and months, instead of considering a tongue tie release.  And they both ended up finding that breastfeeding eventually got better and that they felt frustrated with all of the discussions online about tongue tie and upper lip tie releases, which they feel is being sold as the ‘cure-all’ to lactation woes.

Keep in mind….these are just two individuals’ stories out of many.  We all have our personal stories of parenthood/breastfeeding/labor, etc that skew the way we view a situation because they evoke an emotional response in us.  These emotional reactions are normal, but are that person’s point of view.

What I would like to share are the most pertinent points about tethered oral tissue (TOTs) that were shared in this interview, as well as a few more that weren’t shared due to time constraints.

4 Main Take-Aways about Tethered Oral Tissue (TOTs)

Tethered oral tissue can restrict range of motion in the tongue, lips, and cheeks

• All people have frenulums, but to have tethered oral tissue (TOTs) means that the frenulum is restricting range of motion and impacting function.  Here is a handout that includes many of the symptoms that can be related to TOTs.

• These TOTs do not stretch over time, but some children/adults learn to compensate despite the tightness.  This is why some children and adults don’t show or feel that they have long-term complications.

• Releasing restricted frenula can have a profoundly positive effect on both parent and baby and their ability to meet their breastfeeding goals, but is not always necessary.

International Board Certified Lactation Consultants (IBCLCs) identify tethered oral tissue at a higher rate than pediatricians/ENTs because they are the professionals completing full oral/feeding assessments.  

• IBCLC assessments are not 15 minute well-baby checks.  They are extensive assessments, lasting 1-3 hours, using research-supported evaluation tools.  

• TOTs cannot be evaluated just by looking in the mouth or at a photo of the mouth, tongue, and lip.  Function must be taken into account.

• Parents should be walked through each part of the oral/feeding assessment so that they can make an informed decision about what is best for their child.

• It is always necessary to go back to basics (positioning and latch) first, before blaming a tongue or lip tie. If the symptoms for the breastfeeding parent or baby are not relieved with the basics, then further assessment is necessary.

• Parents should be presented with a menu of options: bodywork (CST/PT/OT/Chiro, etc); oral exercises; tummy time; supplementing; exclusive pumping, etc. - everyone deserves to be supported regardless of their decisions.

There has been an increase of identification of and recommendation to release tethered oral tissue in the past two decades, with good reason

• Increased research and ultrasound investigation on how the tongue and lips function while feeding have shown what is necessary to achieve comfortable, effective breastfeeding and milk removal.  This information was not available until the past two decades.

• There has been a shift in the international culture to be more pro-breastfeeding than it was during the 1900s.  It is unfortunate that some families feel ‘pressured to breastfeed’, as Rachel mentioned in the interview. Personally, I think this shift in societal views towards breastfeeding has more to do with current research identifying the vast health-promoting and immunological benefits to mom and baby when breastfeeding, rather than parents feeling pressured to breastfeed.

• TOTs are nothing new.  Tongue ties and frenotomy descriptions can be found in early Japanese writings, other historical documents, and even the bible.  In the 1600s, frenotomy was widely known and there is documentation that describes that midwives would keep one fingernail long and sharp so that she could release the tight frenulum without the use of an instrument.

• In the early 1900s, formula was advertised as better than breastmilk and breastfeeding was considered as something that only impoverished people do.  Up until then, if a mother could not breastfeed her baby, the family hired a wet nurse or the baby would die due to lack of nourishment. Formula changed the way we looked at infant nutrition and breastfeeding, which meant tethered oral tissue wasn’t viewed as important to address.  With this pendulum shift to positive views about breastfeeding, parents want answers when challenges arise. And many of these challenges can be attributed to TOTs.

There is a lack of evidence specifically studying the long term effects of tethered oral tissue (TOTs)

• There are several case studies and randomized control studies on how frenotomies improve breastfeeding outcome.

• There are some correlations between TOTs and challenges eating solid foods, speech and change in oral/dental structure, but there is only a small amount of research to back this up.   We clearly need more research.

• What we do know is that children with TOTs often mouth breathe, which is widely recognized as pathological and may lead to:

  • open-mouth posture, which can block the airway when sleeping, leading to bruxism, snoring, sleep apnea

  • impaired swallowing, which can lead to a palate that doesn’t naturally expand and Eustchian tubes not opening and equalizing pressure in the middle ear

So, what’s the overall take away message?

When a family has breastfeeding challenges and doesn’t receive a comprehensive oral/feeding assessment that evaluates tongue and lip function, then we run the risk of tongue/lip ties being overdiagnosed and overtreated.   

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For more information about tethered oral tissue, check out these resources:

Dr. Ghaheri’s website

SOS for TOTs by Lawrence Kotlow, DDS

Tongue-Tied by Richard Baxter, DMD, MS

Kellymom: Breastfeeding a Baby with a Tongue Tie or Lip Tie (Resources)

Tongue tie articles on SDBFC’s website

Do's and Don’ts of Using the Nipple Shield

Written by Robin Kaplan, M.Ed, IBCLC

Is your baby having a difficult time latching?  Is breastfeeding incredibly painful?  Do you have a cracked nipple that just won’t heal?  Then most likely you have been recommended to try a nipple shield.  While the nipple shield can often be a terrific temporary tool to help with these situations, it is important to know how to use them correctly, as well as have an exit strategy for how to discontinue usage as soon as possible.

What is a nipple shield and why is it used?

A nipple shield is a thin piece of silicone that is placed on your nipple so that your baby can feed at the breast.  For the baby who cannot latch on easily (due to prematurity, difficult birth, tongue tie, etc) the nipple shield provides a definitive shape for mom’s nipple, making it easy to latch onto.....all baby has to do is open his/her mouth and start sucking.  For the baby who is compressing mom’s nipples while breastfeeding (due to a tongue tie, lip tie, torticollis, receded chin, difficult birth, etc.) causing pain and cracked nipples, the nipple shield provides a temporary barrier so that the baby can still breastfeed while allowing mom’s nipples some relief and time to heal.  Sometimes the nipple shield is offered to a mom just because she has flat nipples.  In most cases, this isn’t really necessary, since a baby who latches on deeply doesn’t care whether mom has flat or erect nipples.

Is there a correct way to use the nipple shield?

YES!  Just as with the baby who latches on to the bare breast, when a baby is latched on with the nipple shield, he/she will only be able to stimulate mom’s milk, keep up her milk supply, and effectively transfer milk if he/she has the entire nipple shield in his/her mouth.  If the baby is sliding off and on the nipple shield while feeding, the baby will not be able to transfer milk well and can also cause mom a lot of nipple pain.  

Depending on how long your nipple is, you might have to invert the shield before putting it on, so that your nipple goes further into the shield before latching your baby.  Our DIY Breastfeeding YouTube Video, Latching: Using a Nipple Shield, demonstrates how to do this.

What are the pros and cons of using the nipple shield?

Pros:

• Mom’s nipple has an opportunity to heal without having to introduce a bottle too early to her baby.
• Premature babies who have not yet become super coordinated at latching on to mom’s bare breast and who tire quickly are able to breastfeed more easily.
• Babies who are unable to latch onto mom’s bare breast, for a variety of reasons, are able to breastfeed while the underlying challenges are addressed.

Cons:

• Babies may not be able to effectively transfer milk using the nipple shield, so baby might need supplementation even if mom’s milk supply is able to meet his/her need.
• Mom’s milk supply could potentially decrease if baby isn’t effectively stimulating her milk supply.
• Mom might get recurrent plugged ducts and/pr mastitis due to ineffective milk drainage.
• Babies can become very dependent on the nipple shield, which can make it difficult to wean from.  This can make breastfeeding in public a bit of a challenge.

How can I wean my baby from the nipple shield?

Babies can become very obsessed with the nipple shield, so sometimes it can be challenging to wean them from it.  This is why you always want to have an exit strategy.  

• If you are using the nipple shield as a temporary band-aid while your nipples heal, try to use it for only a few days and maybe not for every feeding.  If one side is less damaged than the other, only use the shield on the more damaged nipple.  
• If you are using the nipple shield to help with latching difficulties, attempt each day to latch your baby without it.  You never know when he/she is going to figure out how to latch without it and the daily practice should help speed up that process.  Sometimes moms find it helpful to latch the baby with the nipple shield at the beginning of the feeding and then try the ‘bait and switch’ move to encourage the baby to latch back on without it once he/she has a little milk in the belly.
• If you are using the nipple shield due to baby’s inability to breastfeed well because of a tongue tie, lip tie, general chompiness, torticollis, etc., you absolutely want to schedule an appointment with a lactation consultant to help remedy these underlying issues.  The use of the nipple shield might help temporarily, but it may increase your risk for breastfeeding challenges later on, which can be more difficult to fix as the baby gets older.  A great IBCLC should be able to assess what is causing these breastfeeding challenges, as well as provide you with other practitioners who can help remedy the situation, such as an ENT, pediatric dentist, chiropractor, craniosacral therapist, etc.

Advocating When Your Baby has a Tongue or Lip Tie

To help parents understand a bit more about how tongue and lip ties can affect breastfeeding, over the next few weeks we will be featuring stories from moms whose babies experienced these challenges.  We would like to extend a HUGE thank you to the brave mamas who submitted their stories for our blog!  We know you went through a ton of challenges and we are so appreciative that you were willing to share your stories!  If you have a story you would like to share on our blog, please send it to robinkaplan@sdbfc.com.

For more information about tongue and lip ties and how they can affect breastfeeding, please see our article: Does Your Baby Have a Tongue or Lip Tie?

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Written by Kimberly Berry

I am often referred to as a "boob nerd" by many friends. Articles, research, blogs....anything breastfeeding related always interested me. I absorb the information like a sponge. Sharing and helping moms with nursing just came naturally. I never heard of tongue or lip tie though until I was pregnant with my second. A few things I read made me wonder if some of the struggles I had with my daughter were due to a possible tongue/lip tie in her. She had self weaned recently though, so I never gave it much more thought. That reading on tongue ties proved to be invaluable to me in just a few short months however.

My handsome baby boy came flying into this world at 5:01pm on a Friday afternoon. The moment he was handed to me after his birth, I saw it glaring right back at me as he cried and took his first breaths. A tongue tie. His frenulum stretched all the way to the tip of his tongue. I kissed and nuzzled him close to calm him, warm him. Once calm, I looked at my husband and said, "He has tongue tie." My husband, confused said, "..ok?" not knowing what I knew. Not knowing how that can affect breastfeeding. Not knowing the possibility for pain and injury for me while nursing our second child. The nurse nearby heard me and chimed in to say "Oh, it's just a small one, no worries!" I told her I wanted to see a lactation consultant. She nodded her head and continued on with her work. 

I then began the process of trying to get him to latch for his first feed, although I knew that it could quite possibly be as bad, or even worse than the pain I just endured to bring him into this world. He was disinterested. So we snuggled and I tried every five minutes or so. Finally, 45 minutes after his birth, he latched. I unlatched and relatched him over two dozen times before it felt even remotely close to ok. I asked again to see the lactation consultant on staff. I did breast compressions and massage to help encourage colostrum into his little mouth that he was trying so hard to get to work correctly. Becoming annoyed, I would then ask every person that came into my room to bring me a IBCLC. I was met with "Yes, sure thing!", "You are on the waiting list", "Your nipples are just too big for his mouth"... I could go on and on with the excuses I heard the rest of that day and overnight. We struggled through each feeding. He was frustrated, and so was I. When he cried, his tongue looked like a heart. My heart broke that this was going on and help was seemingly out of reach. 

Finally, at 9am the next day, a IBCLC stopped in to "see how breastfeeding was going." I told her that I had been asking to see a lactation consultant since his birth the evening before. Shocked, she said she was not made aware we needed her. We discussed for several minutes how crucial nursing support is to new mothers and who she was going to speak with about the situation. I made my notes on who to contact as well  as who to advise of the lack of proper treatment. Then we got down to the business at hand. She agreed immediately that my son had a tongue tie, and not "just a small one" as the nurse had called it. She called right then for the ENT to work us into the schedule immediately to have it clipped. Unfortunately, we were knocked back on the list several times due to other emergency surgeries that day. While I am a patient person, I was becoming angered that the fact that my child was having trouble eating was not a concern to most of the staff. 

The next day, the day of our discharge, arrived and we were still muddling through feeds. I was starting to become very sore. Again, we were told time after time that we were next in line for his procedure, only to be knocked back again by an emergency surgery. How many emergency surgeries were there?! How many other new mothers were waiting for the same help I was??? The IBCLC I had spoken with the day before was not working. The other IBCLC couldn't get to us until that afternoon. Our nurse was sympathetic, but said this seemed to be typical of the weekend. Finally, I said enough is enough and took matters into my own hands. I looked up the ENT my daughter sees. Being a Sunday, the after hours line was activated. I left a message to see if anyone could call me back to let me know if they preformed frenulectomies on newborns. Thankfully, a sweet nurse called me back after about 5 minutes. She said that they did do the procedures, but I would have to call back in the morning for a appointment. 

We left the hospital and never looked back. I bared through the pain of the feedings until that appointment with the ENT the next afternoon. The frenulectomy was not easy to watch, but it helped so much. When he nursed when it was over, I could tell a difference, not a huge one immediately, but enough that I didn't wince up and have tears in my eyes the whole time. We only had to relatch six times instead of more than a dozen times. Each day thereafter, nursing was getting better and better. We practiced the exercises and I continued trying to heal my nipples. After several days, he started gaining weight and I was settling into being a mommy of two. Nursing became a joy again. Something I once again looked forward to. It was now my time to look in awe at my newborn and be proud of my body’s amazing ability to grow this perfect being and now continue to nourish it. 

Without a doubt, if I didn't know anything about breastfeeding or tongue ties, I would have thrown the towel in and given up. It was clear for me to see why so many new mothers do. In a mom’s group I help with, I constantly tell new mothers to check for tongue/lip ties. Even if someone says there isn't one, or if its minor and won't affect breastfeeding, know how to look yourself and find someone who will help you. You have to be your own advocate. Your babies advocate. We look to these medical professionals to guide and help us. Unfortunately, sometimes that's not always the case. It's crucial for them to receive the proper training, listen to their patients, and have resources available to help mothers and babies. It's crucial for mothers to be determined, educated, and supported. All of these things go hand in hand for successful breastfeeding. My son went on to nurse until he self weaned at 13 months.

What a Difference a Tongue Tie Revision Can Make

To help parents understand a bit more about how tongue and lip ties can affect breastfeeding, over the next few weeks we will be featuring stories from moms whose babies experienced these challenges.  We would like to extend a HUGE thank you to the brave mamas who submitted their stories for our blog!  We know you went through a ton of challenges and we are so appreciative that you were willing to share your stories!  If you have a story you would like to share on our blog, please send it to robinkaplan@sdbfc.com.

For more information about tongue and lip ties and how they can affect breastfeeding, please see our article:Does Your Baby Have a Tongue or Lip Tie?

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Written by Nina Jacobs 

Aubrielle was born on August 3rd, 2013 at 36 weeks due to my preeclampsia. She was 5lbs 13 ounces of tiny beautiful joy. I knew from the moment I found out I was pregnant that I wanted to breastfeed (my goal being for a year). I had no idea then, that it would be such a wonderful, beautiful, bonding, humongous part of my life. We were in the hospital for 5 days because of Aubrielle being considered a "late premie" and all of the meds I had to come off of to make sure I didn't have a seizure. Aubrielle was immediately diagnosed with a severe tongue tie by the pediatrician and two lactation specialists. We made an appointment to have her tongue tie snipped at 4 days old with ENT. In the mean time, she was latching, and eating as best as her little mouth could while we supplemented with pumped milk and feeding her through a tube and syringe. 

When we arrived at her appointment, the ENT doctor asked us if she was latching. She was with a nipple shield. He said that she was so small and fragile and because she was able to latch, he would not perform the operation on his daughter if it was him. So, we went home. We spent the first month figuring everything out. We didn't keep to any schedule and just took cues from her. Aubrielle would eat for 40-70 minutes and ask to eat again 2-45 minutes later....all day and all night. I didn't know any difference and just was rolling with it. 

At her one month check up, she wasn't gaining THAT much weight. She was still under 5% (the same that she was born at). We chose not to supplement and to reschedule the tongue tie procedure because the pediatrician was outraged that she didn't get her tongue tie snipped and that she was feeding so frequently.   She would still fall asleep every time she ate and by the time she woke up she would be starving again. By the time we called to reschedule her procedure, they couldn't see us until she was 9 weeks old. Around her 6 week growth spurt, I came to the doctors office crying. It seemed like she was literally eating every second that she was awake. They still couldn't see us until 9 weeks. We pushed through and never supplemented.

At her two month check up she was still in the 5% for weight. We finally had the procedure done. It was awful... more blood and tears than I expected and I could tell that she was in pain every time she began to eat for 5 days after the procedure, even with the tylenol we were giving her. But, oh.my.gosh. The difference in her eating, her behavior, and my supply was NIGHT AND DAY. Instead of eating for 70 minutes she would eat for 20. She didn't fall asleep every time and was clearly satisfied after each feeding. It was the hardest, best thing we did. I wish we would have pushed for it at 4 days old. For three days after the surgery we had to "sweep" in between her tongue and bottom of her mouth, and for the first two days it would start to bleed a little, but nursing always stopped the bleeding. In fact, in the doctor's office, that is how they had us stop the bleeding. 

Before tongue tie revision

After tongue tie revision

We still used the nipple shield until she was 5 months old, which is when she took it off, threw it on the ground herself, and kept eating. Now at 6 months plus, she is a happy, healthy, thriving, nursing baby who went from the 4th percentile at her two month check up (a week before her surgery) to the 30th percentile at her 4 month check up. She has tripled her birthweight  at 6 months and only eats every 2-3 hours during the day, and only wakes up once at night to eat. 

Breastfeeding After a Tongue Tie Revision

To help parents understand a bit more about how tongue and lip ties can affect breastfeeding, over the next few weeks we will be featuring stories from moms whose babies experienced these challenges.  We would like to extend a HUGE thank you to the brave mamas who submitted their stories for our blog!  We know you went through a ton of challenges and we are so appreciative that you were willing to share your stories!  If you have a story you would like to share on our blog, please send it to robinkaplan@sdbfc.com.

For more information about tongue and lip ties and how they can affect breastfeeding, please see our article:Does Your Baby Have a Tongue or Lip Tie?

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Written by Cinda Brown

Lily and I had a rough start with our breastfeeding relationship from the very beginning. She latched soon after she was born and in that instant I felt sharp pain and noticed there was blood. She had caused damage with her first latch. We stayed at the hospital for about 24 hours, and in that time she had pretty severely damaged both of my nipples. I consulted with friends and professionals who had breastfed before, but didn’t get the kind of guidance I probably should have. No one’s fault, but no one had seen or experienced what I was going through so they gave me what they thought was very well meaning advice. Unfortunately I really needed to see an IBCLC, but I didn’t know that such a person existed.

After 2 rounds of mastitis, one being 7 days postpartum with 104 degree temperature, completely exhausted with a baby who cried all night long, I finally called the breastfeeding warmline at Balboa Hospital. Lily was about 4 weeks old. I don’t know why I hadn’t called it before, but I suspect it was because I thought I had received help already. I had been told by a friend that I was getting mastitis because Lily wasn’t emptying all the milk from my breast and that I needed to pump. So I did, starting at about 5 days postpartum. I ended up with such an oversupply from this, but didn’t know that I shouldn’t have been doing that. I think that this is ultimately what caused my second bout of mastitis. All the while I was scabbed and cried every time Lily latched. My nipple looked like the pointed end of lipstick when she finished nursing. This was unsustainable and I had no idea how women were able to breastfeed their children.

So, back to the call to Balboa. The nurse had me come in right away. She said that she suspected that Lily had a tongue tie and tried to also help me with technique. The technique didn’t help a lot, but I had developed a ton of bad habits trying to deal with the pain....like cursing, hunching over, stiffening my body in pain while she nursed, and the list goes on. She tried to help me relax, but it was to no avail. I was in so much pain. She talked to me about seeing the doctor for a possible clipping and I was immediately against it when it was described to me. We were talking about cutting in Lily’s baby mouth! Really?!?! I just had to be tougher and with that thanked the nurse for her help, and I truly meant it. I just had to go home and practice more. My husband helped me with what we had learned and it was exhausting for both of us. Neither of us could get Lily’s latch correct no matter what we tried. This led to lots of tears and frustration between both of us as we struggled to get it right. I was adamant that I was going to breastfeed, and at some points I felt like it was going to kill me to achieve that goal.

Two days later I was back with the nurse at Balboa, in tears. I was ready to see the doctor to talk about this procedure. I knew that the breastfeeding relationship between Lily and me wasn’t going to last much longer. Lily was about 5 weeks old at this point, so I had been enduring for 5 long, excruciating weeks. We met with Dr. Jim Murphy and he explained the procedure. I was onboard, knowing that at this point I was willing to try anything. The procedure wasn’t entirely pleasant, but I suspect it was because Lily was being held still, which she didn’t like and that she wasn’t being held close to me, which she did like. The clipping was really quick and Dr. Murphy immediately gave her back to me to have her latch. It felt very different! No big pinching feeling. Relief!

We were told to do stretching exercises after each nursing session. I did them religiously. It wasn’t all rainbows and unicorns as Lily had developed her own technique to get milk, which involved biting or gumming my nipples. It worked for her, but not for me. We had to learn together how to make this work well for both of us. Because of my abundant oversupply, she was not the typical underweight baby at her checkups. In fact she was right around 100% for both height and weight at each one. No one had suspected that we were having a problem.

A few weeks later the lipstick nipples, pain, pinching, and scabbing were back. We went back to see Dr. Murphy and he said that her tongue had healed in a way that indicated that he had to re-release her tongue. Heart breaking. We had to do the clipping again. We did, it was quick, and Lily latched right on. Nursing became easier after this, although we did have to go through a relearning process again. 

By the time I had to go back to work (when Lily was about 11 weeks old) we were doing great. She was sleeping better at night and I was able to think about trying to go running. Prior to this the thought of running was horrifying because my breasts and nipples hurt so badly. I continued to pump ALL THE TIME to try to relieve the pressure, knowing now that I was just keeping the output at maximum level. I was so relieved to have identified the problem that had caused us so much pain and suffering, so I started trying to learn as much about it as I could.

I’m a huge breastfeeding advocate and am an active duty Navy mama. I understand the challenges and difficulties presented to mothers with young children, and trying to balance this with a demanding job. I have sought education and am now working toward completing the Certified Lactation Educator certification and hope to help many more mothers have a successful breastfeeding relationship with their children. My own command has responded with support for the new mothers by allowing me to establish breastfeeding rooms and a support group. Lily is now almost 2 and a half, and nurses now more than ever. I know that if it weren’t for that wonderful nurse and Dr. Murphy that we wouldn’t be here today, and I am forever grateful for their assistance and that we were able to get the tongue tie clipping procedure.

The Lip Tie/Tongue Tie Challenge

To help parents understand a bit more about how tongue and lip ties can affect breastfeeding, over the next few weeks we will be featuring stories from moms whose babies experienced these challenges.  We would like to extend a HUGE thank you to the brave mamas who submitted their stories for our blog!  We know you went through a ton of challenges and we are so appreciative that you were willing to share your stories!  If you have a story you would like to share on our blog, please send it to robinkaplan@sdbfc.com.

For more information about tongue and lip ties and how they can affect breastfeeding, please see our article: Does Your Baby Have a Tongue or Lip Tie?

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Written by Julie Sanders

My issues with breastfeeding my daughter started pretty much as soon as we left the hospital. I started experiencing a lot of pain in my nipples. Not just while she was nursing, but all the time. I was told it was normal for her to nurse 8-10 times a day, but my daughter was nursing 20+ times a day. Essentially, she was constantly nursing, with maybe a 10-20 minute break between sessions. I found that since any side-lying, cradled position was extremely painful, only the football hold position worked for me. I went to a breastfeeding support group her second week, and I learned that my daughter was chomping my nipples while she nursed, and that’s why they were in constant pain. Nipples are supposed to come out of a baby’s mouth just as round as when they went in, but mine were shaped like a football after a nursing session. No wonder! Someone suggested I try nursing her lying down because she was perhaps trying to stem a strong flow of milk into her mouth, but that didn’t help. On top of it all, I also got a clogged duct, which was painful and scary. I was in such excruciating pain I would cry when my daughter wanted to nurse because I just wanted a break for my poor nipples to heal. I didn’t know why it was so hard or what was wrong. The only thing that got me through this period were gel pads. The moist, cold combination was wonderfully soothing.

When my doula came over for our postpartum visit, she checked my daughter’s latch and suggested that we have her evaluated for a tongue tie. She said it didn’t look like her tongue reached far enough forward in her mouth (past the gums). We had never heard of a tongue tie before. She explained it is a very common, simple procedure our pediatrician could perform to snip the underside of her tongue to allow for greater mobility. I rejected the idea at first. The idea that my daughter wasn’t born with her mouth properly equipped to handle breastfeeding seemed ridiculous to me. My daughter was perfect in every way! But later that week when she had a wellness checkup, we asked about the tongue tie. Our pediatrician said it looked like there was indeed a tongue tie, and he would revise it if we wanted him to.  So he clipped the frenulum under her tongue. It was done with scissors while the nurse and my husband held her down. He gave her just a topical gel to numb the area, then had to do about 3-4 snips to cut what he deemed enough. She wailed like I had never heard before and cried real tears. I cried real tears too. It was scarring. I nursed her immediately afterwards to help stop the bleeding and she slowly calmed down. The bleeding stopped very soon and she seemed on the road to recovery. She had a little discomfort for the next day or two. I thought the nightmare was finally over. But it wasn’t. At first I noticed a relief in how she nursed, but it was very short lived. I found out at the breastfeeding support group the next week that there were exercises we were supposed to be doing to help my daughter learn to use the full range of motion of her tongue. The lactation consultant who runs the group emailed me a video with instructions. I did them several times a day, as suggested, but nothing changed.

At around three weeks we finally saw a lactation consultant. I wish I had seen her during week one! Within minutes of telling her our history and examining my daughter, she told us my daughter also had a lip tie, and explained that my daughter nursed constantly because she was only able to get enough milk to satiate her for a short time before she would get hungry again. I hated the idea that my daughter had another tie. My perfect baby was still perfect!  But we followed the advice of the lactation consultant and went to a pediatric dentist in the San Bernadino area who uses a laser instead of scissors, a tool that was supposedly less traumatic on both patient and parent. The thought of driving 80 miles with a baby so young almost deterred us, but we decided to go for it.

The dentist had my husband lie down in the chair and hold my daughter face up on his tummy. Being held by dad was far less traumatic than being pinned to a table by strangers. She also got to wear adorable little sunglasses to protect her eyes from the laser. The dentist checked her out and said she did indeed have a lip tie, and he wanted to do another revision on her tongue to cut more of the frenulum. It literally a minute per tie, if even. He lasered, she cried, and before I could even get upset he was done. I nursed her immediately, just like before, and she calmed very quickly. They gave me exercises to do with her several times a day to help the range of motion for her mouth. Once again I left with the feeling of “It’s over. It’s finally over.” But it wasn’t.

The discomfort again only lasted a day or two, and seemed a little worse for her lip than her tongue. I did the exercises but she just kept chomping. Though with the new mobility of her tongue, her bottom gums were padded a bit, and the pain, while still painful, was much more bearable by comparison. By this point I had gone through so much, I was determined to make this work. My lactation consultant had told us “body work” might be required. After all, my daughter had used her mouth to nurse a certain way her whole life thus far and she was used to it. So we went to a craniosacral therapist. The therapist observed my daughter while she nursed and felt all around her head to examine how her muscles were moving. She massaged around her head and jaw for a bit, and then she told us my daughter’s jaw was very tight, and that’s why she wasn’t latching correctly, but that there wasn’t anything she could do to loosen it.

Next we tried a chiropractor. Chiropractic was another kind of body work my lactation consultant had suggested we may need. She recommended a few people who worked with babies in my area. Over the next two weeks I saw the chiropractor three times. She adjusted areas in my daughter’s upper spine and around her jaw to try and loosen it. Between the three appointments and our periodic massaging of her jaw, gradually at around six to seven weeks old, my daughter’s jaw loosened, she stopped chomping my nipples, and started sucking the way Mother Nature intended. It felt like an eternity, but she is now three months old and our time breastfeeding is easy, a lovely bonding experience and no longer something I dread. It’s easy and wonderful, and it was worth every minute we spent at appointments and every dollar we spent on doctors and specialists and consultants.

I learned a great deal during this trial. A good lactation consultant is invaluable. Ours not only identified our issue right away, but she had all the references to specialists we needed. We were not in a place where we could have researched and found someone to go to on our own. We trusted our lactation consultant, we went where she sent us, and we were never disappointed. Surrounding myself with people who supported my determination to exclusively breastfeed was also pivotal. Being a new mom is an emotional time with many ups and downs even when breastfeeding is going well. My mental state really ran the gambit, and having people to tell me it would get better and that I could do it helped me through my lowest moments. The friend who introduced me to gel pads is an absolute saint! And I learned how strong a person I am.  Compared to this experience, labor was easy. I always referred to what we were going through as “a breastfeeding challenge” because a challenge is something you overcome, and usually leaves you stronger and better off than when you started. 

My Village of Breastfeeding Support

 Over the next few weeks we will be sharing stories of triumphant breastfeeding mamas and their biggest supporters who helped them reach their personal breastfeeding goals.  If you would like to share your breastfeeding story and thank your biggest breastfeeding cheerleaders, check out the details in our recent blog article.

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Here is Stephanie's story.

It has truly taken a village to help me be successful in nursing both of my babies!  I knew I wanted to breastfeed, but, after the birth of my first son, my passion and commitment to it were a surprise to even me.  I was also caught extremely off-guard by the difficulties both of my boys encountered as we began our breastfeeding journeys together.  Tongue ties, lip ties, low weight gain, low supply, poor latch, pain/cracking/bleeding, overactive letdown, and more were all hurdles we had to cross.  There is absolutely NO way I could have made it to 13 months formula-free with my first son and still going strong and formula-free at 6 months with my second without these amazing people.

My husband!  My passion and commitment to breastfeed my babies surprised him also, but he never questioned it and stood by me no matter what decisions I made!  He became just as committed and passionate about it, knowing it was the best thing we could do for our boys.  He came to appointments, helped get the baby latched on time after time, stood up for me when others questioned why I didn’t just quit, and let me cry when it all just became too much!  He has truly been my rock through all of this, and I can sense his gratitude for the sacrifices I have made to give our boys this amazing gift!

My Lactation Consultants! Four different lactation consultants have come alongside my babies and me in our journey together.  Every single one of them encouraged me that I could do it when the hurdles seemed insurmountable.  They provided a listening, sympathetic ear when I just needed to vent or cry or talk it out.  They provided help, advice, referrals, and life-changing solutions that kept us going!

My tribe of other breastfeeding Mamas! Friends I have known since childhood, friends I’ve made in recent years, and people I met through the breastfeeding process made it all possible - others who had or were experiencing some of the same challenges, some who didn’t have trouble but believed just as passionately in the benefits of breastfeeding, some who visited, some who called, and one who even created an on-line community to connect us all!  There were many people in my life who didn’t understand why I didn’t give up when they saw the emotional and physical toll it was taking on me, but these other Mamas got it!  They knew why I couldn’t quit, why no challenge was too big!  

My virtual breastfeeding community!  Although I will never meet most of these women in person, the support, advice, commiseration, and encouragement they have provided have truly been critical!  To be able to jump online in the middle of the night when it just seemed like I couldn’t do it and have others on there to tell me that, yes, I could do it got me through many rough moments!  They have calmed nerves, answered questions, given virtual hugs, and just been an amazing support system!

My babies! Even from the very start and even in the face of all of our challenges, my babies have always loved nursing!  They didn’t quit so there was no way I could!

Finding My Tribe of Women Through Milk Sharing

Welcome to the World Breastfeeding 2013 Blog Carnival cohosted by NursingFreedom.org and The San Diego Breastfeeding Center!

This post was written for inclusion in the WBW 2013 Blog Carnival. Our participants will be writing and sharing their stories about community support and normalizing breastfeeding all week long. Find more participating sites in the list at the bottom of this post or at the main carnival page.

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This post was written by MJ Fisher.

Milk sharing has been a huge blessing in our lives! The mamas and families that have donated to us will forever have a place in our hearts and our lives. I believe using donor milk has impacted our breastfeeding relationship by saving it! I was not able to make all of my son’s milk, but so many awesome, generous mamas donated their milk to help feed our baby, which is a pretty amazing thing! Supplementing with donor milk motivated me to do everything I could to increase my supply and save our nursing relationship so I supplemented at the breast and nursed on demand. I’m super passionate and emotional about breastfeeding and milk sharing because I’m so extremely thankful our son has only had breast milk and also because he is 2 years old now and I’m still nursing him despite having a low supply.

When I was 23 years old with 38DD breasts, I had a breast reduction.... for good reasons, yes? Yes, but if I were to do it all over again, knowing that I could possible exclusively breastfeed, I think I might have waited on the surgery. But, then again, I might not have needed donor milk and met all my wonderful donor mamas!! I had my reduction in 1999 and my son was born in June 2011. After having an empowering homebirth, we had a few days of exclusively breastfeeding (EBF) bliss.  Then our midwife weighed our son and he hadn’t gained enough and we were fighting jaundice. We got off cloud 9 and made a plan of what we needed to do – nurse, supplement, pump, supplement and repeat through the day and night. I wanted to nurse so bad and we only wanted our son to have breast milk so I opted to use a Supplemental Nursing System (SNS) with the donor milk. We nursed on demand, all day, during naps and throughout the night and supplemented with the SNS about 5 times a day in the beginning. It was draining, but I’m thankful now because I believe it only helped my supply. I’m also very lucky that my son was fine with any amount of milk I could make for him, I know some babies get frustrated when the milk doesn’t flow and mine did not when we nursed without the SNS.

 Our midwives enlightened my husband and I (as they have done about a TON of things) about donor milk because we had NO CLUE! Even my sister, a post partum doula in LA, knew about milk banks and the decent amount of money they charge.  Our midwives told us that there are mamas out there that make more milk than their babies need and they will donate it – my heart just dropped and tears were running down my cheeks, I still have no words! What a selfless act! Taking time out multiple times in your day, away from your children, to pump milk to feed other babies and help them to thrive and if you’ve ever pumped before you know what a PITA that can be! We had our hearts set on our baby only having breast milk, for we knew how beneficial it was to build a strong immune system, resistance to disease and infection, as well as many long term health benefits, so having milk donated to us was a huge stress reliever. 

Now that we decided we wanted donor milk, we had to find it. It was always quite a journey, trying to find milk, not knowing if we would get enough, driving all over the county, sometimes out of the county to pick up milk. Meeting other mamas who helped us feed our baby for a one time encounter/donation or for the fourth or fifth time suddenly became our friends, with us even scheduling play dates with our kids. Sometimes my husband would make the milk run – we joked that he was my milk man! Thankfully we got a lot of donors sent our way from our midwives.  They would give us a little background on the mama and we found comfort knowing they came recommended from them. We were so blessed to have had a few long term donors, one mama who pumped 45-50oz per day!!! When we would find donor mamas outside of our midwives (we used Eats on Feets Facebook page) there were a few questions our midwife gave us to have the donor answer. Since we had no connection with the mama, those questions helped us get to know her a little better and determine if she was a good match for us, our baby and our comfort level. 

Here are the questions - Can you tell me a bit more about you? What’s your baby's age? Do you drink alcohol/caffeine? Where did you deliver, hospital or home? Can you tell me a bit about your diet? I presume no, but any diseases you are positive for? 

I know some mamas that feel they don’t need to ask any questions and feel that if the donor mama breastfeeds her own baby then there is no need to worry about anything being wrong with the milk. For us, we liked to get to know the mama and it made us feel better when a donor mama didn't hesitate to answer any of our questions. I would hope she would put herself in my shoes and would do the same thing.

 

Our son has had about 10 different donors from birth to 1 year old.  We'd like to think he's a super baby with so many different mamas' antibodies! I feel like we can never thank our donor mamas enough for helping us feed our baby and giving him the chance to be as healthy as possible with only breast milk. With the help of my midwives (also a LC), my husband, my donor mamas, the SNS and both me and my sons want to EBF we are still nursing at 2 years old!!! We supplemented with the SNS using donor milk until 12 months old.  Then we used goat milk in the SNS until 18 months old. All of our hard work paid off when I finally became an EBF Mama! I feel like my supply improved with the use of the SNS and I never would have used the SNS if I didn’t have donor milk.

To put a cherry on this breastfeeding sundae, all of my donor mamas are now my friends. Some are my soul sisters, a part of the village of mamas I surround myself with to lift me up and cheer me on! This whole experience has enriched my life, my family’s life and given me peace with a decision I made to have surgery. Anything that is “worth” it, doesn’t come easy anyways!

One Breastfeeding Love, 
Mj Fisher (Married to Jason, Mama to Jason Jr. ~ 2 years old)

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Visit NursingFreedom.org and The San Diego Breastfeeding Center for more breastfeeding resources and WBW Carnival details!

Please take time to read the submissions by the other carnival participants. Below are a list of links for today's participants; you can find a complete list of links (updated throughout the week) at our main carnival page:

(This list will be updated by afternoon August 5 with all the carnival links.)

• An Unexpected Formula-Fed Attachment — Kyle (of JEDI Momster and) writing at Natural Parents Network, exclusively breastfed three healthy babies. So when she was pregnant with her fourth, she assumed she would have no breastfeeding troubles she could not overcome. Turns out, her fourth baby had his own ideas. Kyle shares her heartfelt thoughts on how she came to terms with the conclusion of her breastfeeding journey.
• It Take a Village: Cross Nursing — Shannah at Breastfeeding Utah shares how cross-nursing helped her baby in their time of need, and how that experience inspired her to create a community of cross-nursing and milk-sharing women.
• Random little influences and Large scale support communities lead to knowing better and doing better — amy at random mom shares how her ideas and successes involved with breastfeeding evolved with each of her children, how her first milk sharing experience completely floored her, and how small personal experiences combined with huge communities of online support were responsible for leading and educating her from point A to point D, and hopefully beyond.
• Mikko's weaning story — After five years of breastfeeding, Lauren at Hobo Mamashares how the nursing relationship with her firstborn came to a gentle end.
• My Milk is Your Milk — Lola at What the Beep am I Doing? discusses her use of donor milk and hhow she paid the gift back to other families.
• World Breastfeeding Week 2013 Blog Carnival - Celebrating Each Mother's Journey — Jenny at I'm a full-time mummy lists her experiences and journey as a breastfeeding mother.
• Working Mom Nursing Twins — Sadia at How Do You Do It? breastfed her twin daughters for 7 months. They made it through premature birth and NICU stays, her return to full-time work, her husband's deployment to Iraq, and Baby J's nursing strike.
• So, You Wanna Milkshare? — Milk banks, informed community sharing and friends, oh my! So many ways to share the milky love; That Mama Gretchen is sharing her experience with each.
• Milk Siblings: One Mama's Milk Sharing Story (and Resources)Amber, guest posting at Code Name: Mama, shares how her views on milk sharing were influenced by her daughter receiving donor milk from a bank during a NICU stay, and how that inspired her to give her stash to a friend.
• Humans Feeding Humans — Krystyna at Sweet Pea Births shares ideas on how we can celebrate all the different ways modern mommies feed their babies. While we are comfortable with the breastmilk-formula paradigm, she proposes that we expand our horizons and embrace all the different ways mamas feed their infants.
• When Breastfeeding Doesn't Go As Planned — MandyE of Twin Trials and Triumphs shares the challenges she faced in feeding her premature twins. She's still learning to cope with things not having gone exactly as she'd always hoped.
• Taking Back My Life By Giving Away My Milk — When Amanda Rose Adams's first child was born, he was tube fed, airlifted, ventilated, and nearly died twice. In the chaos of her son's survival, pumping breast milk was physically and mentally soothing for Amanda. Before long her freezer was literally overflowing with milk - then she started giving it away.
• The Tortoise and the Hare — Nona's Nipples at The Touch of Life discusses why we care about breast milk and formula with everything inbetween.
• Finding My Tribe of Women Through Milk Sharing — Mj, guest posting at San Diego Breastfeeding Center shares her journey breastfeeding with low milk supply and supplementing with donor milk using an at the breast supplemental nursing system. She shares the impact milk sharing has had on her life, her family, and how it saved her breastfeeding relationship. Her article can also be found at her blog:
•  Human Milk for Human Babies — Sam at Nelson's Nest shares her perspective on milk-sharing after an unexpected premature delivery left her pumping in the hopes of breastfeeding her son one day. Sam's milk was an amazing gift to the other preemie who received it, but the connection was a blessing in the donor mom's life too!
• Sister, I Honor You — A mother feeding her baby is a triumph and should be honored, not criticized. Before you judge or propagate your own cause, go find your sister. A post by Racher: Mama, CSW, at The Touch of Life.
• Every Breastfeeding Journey Is Different, Every One Is Special — No two stories are alike, evidenced by That Mama Gretchen's collaboration of a few dear mama's reflections on their breastfeeding highs, lows and in betweens.
• Quitting Breastfeeding — Jen W at How Do You Do It? share a letter she wrote to her boys, three years ago exactly, the day she quit breastfeeding after 9 months.
• A Pumping Mom's Journey — Shannah at Breastfeeding Utah shares about her journey pumping for her son, who was born at 29 weeks.

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