Breastfeeding When Your Baby Has Tongue Tie
By Bec Sirsen, 32 years old
Working parent, wife to one, tongue tie warrior, mum to 3 year old Isaac and baby 2 on the way
——–Message from Mish———
When I published this blog on breastfeeding, Bec reached out to me to share her experience with the difficulty of breastfeeding when your baby has tongue tie.
Bec’s experience of trying to breastfeed will resonate with many women who experience feelings of guilt, shame and disappointment that they are unable to do something that would seem to be the most natural thing in the world.
Bec persevered. but experienced pain, extremely long feeding regimes, sleep deprivation and her baby was of concern from low weight gain. Isaac was 7 weeks old when diagnosed with being tongue tied. But her story did not stop there.
Bec has written an enthralling recount of the early days of her first babies life… and I think her story is so valuable to others… and in Bec’s words –
“I believe that there is absolutely and without a doubt, a tongue tie epidemic”
Bec hopes that by sharing her experience, she in turn will help other mothers who find themselves in a similar situation.This is her story.
Our tongue tie journey began in July 2014, moments after the birth of my first child, Isaac. Following a pretty normal labour and birth (with the exception of my postpartum haemorrhage), I remember thinking it was a little unusual that my newborn didn’t breastfeed immediately after he was born and that he had no real interest in latching on hours after.
I hadn’t had any drugs during labour and he appeared to be as healthy as could be. Prior to going into labour, I had read a lot of literature, spoken to many women (family and friends), attended Lamaze classes and had been told many times, as well as seen many examples on social media and reality TV, images and clips where, immediately following birth, the tiny, helpless baby instinctively bobbed up toward the breast and latched itself on.
Why won’t my baby latch on?
We spent 4.5 days in hospital for monitoring following my haemorrhage, and even though I mostly felt well, those 4 days honestly felt like 4 years. The first day of Isaacs little life was spent with his mum trying to “wake him up” and “latch him on”. The staff insisted that I had to “FEED! FEED! FEED!” even if he didn’t want to! Although the midwives were attentive, compassionate and brilliant in their own helpful ways, breastfeeding was excruciating and Isaac kept falling asleep during his feeds. They tried several different approaches.
“Is this normal?” I asked. The replies I received from the different midwives all concluded that the pain I was experiencing was definitely normal.
“Your baby needs to learn how to feed.”
“Your nipples will toughen up over time.”
“You may have a bit of thrush and that’s why it hurts.”
“It will get easier” they said.
I was sceptical.
I barely had any rest the next few days and out of desperation, I ended up expressing my colostrum and milk via a breastpump and feeding Isaac with a syringe. My midwives were supportive but highlighted that this pumping arrangement should only be temporary.
“You need to encourage bonding through breastfeeding.” Said one.
“It will get better.” Said another.
The right help… finally!
On my last night in hospital, a new midwife who I hadn’t met before, marched in while I was on the breastpump. She was tall, strong and burly and she meant business.
“What are you doing with that?” She said.
“Oh, um… I am struggling with the feeding. It just feels wrong. And it really hurts. I can’t stand it anymore.” I admitted, tears streaming down my face.
She looked at my reddened nipples which had begun to blister, then at my husband and immediately ordered him to drive to the late night chemist to purchase a pair of nipple shields.
“Size medium!” She barked as he scurried out the door.
My first time feeding Isaac with the nipple shields can only be described as euphoric relief. The milk flowed freely and there was no pain. Within 45 minutes, Isaac fell off the breast, full, sleepy and content. I was amazed. ‘So this is what breastfeeding is supposed to be like?!’ I thought.
The next day we were discharged from hospital and we went out into the world on our own. Although I was relieved to have a temporary solution to the feeding issue, I couldn’t help but feel ashamed, confused and upset that the breastfeeding wasn’t working naturally.
The Dangers of Nipple Shields
The following days were a drawn out haze of tears, pain and doubt as we persisted with breastfeeding with and without the silicon nipple shields on. I was feeling embarrassed by the fact that I was having to use the shields and resented the awkwardness of putting them on, especially in the presence of visitors. I was exhausted and depleted by the pressure I was putting on us at every feed.
I had never heard of or seen anyone else I knew using nipple shields and every piece of literature I read since getting them warned about the “dangers” of using them for too long. Phrases such as ‘interrupted milk transfer’, ‘baby becoming reliant on the shield to feed’, and ‘lack of bonding and skin-to-skin contact resulting in eventual refusal of the breast’ were sprawled everywhere. I had never felt so overwhelmed and confused in my entire life. I was determined to go natural and not use them.
I spent the next few weeks feeding on and off the shields in the hope that we could “phase them out”, but every time I fed without them I experienced crippling nipple pain and ended up with grazed or blistered nipples. Isaac also developed suck blisters on his lips. I noticed that feeds could last for hours at a time and Isaac would want to feed again shortly after I had taken him off (also known as cluster feeding).
I could spend more than 2 hours doing a single breastfeed then 40-60 minutes later he would cry for another. It was absolutely exhausting. I could feel he just wasn’t getting enough milk. Isaac then started showing signs of severe discomfort after feeds and was beginning to fuss and struggle when he tried to latch on. He also came off the breast with milk dribbling out of his mouth and down his chin.
“I have had ENOUGH!” I exclaimed to my husband early one morning, after spending 5 hours straight overnight with Isaac attached to my boob.
“This is not right. It shouldn’t be like this! It’s just not normal. I need help, I can’t do this anymore!” I cried, exhausted and defeated.
Looking for answers
After explaining the situation to my Maternal and Child Health Nurse (M&CHN) at Isaac’s 4 week check-up, I was put onto a local council-run breastfeeding drop in centre where I was invited to meet with professional Lactation Consultants (LC’s) and be supported through a breastfeed. I visited the centre many times over the coming days and weeks. Their kindness and support was comforting and I immediately felt at ease with them. We managed some “successful” feeds (i.e. Isaac latching, feeding and taking himself off the breast after 45 or so mins) but to my disappointment, I still had the pain.
I had also kept in touch with (and harassed) the hospital who, at 7 weeks postpartum, as a result of Isaac’s weight gain slowing, scheduled an appointment with one of their LC’s for further investigation. At the appointment a few days later, the LC observed me feeding Isaac and concluded “Everything looks great. You may just have a low milk supply.”
“It’s not great.” I replied. “Something’s not right. I don’t have a low milk supply! I get almost 150 mls of milk per breast every time I express. I’m not leaving here until I know what the problem is.” I said firmly, close to tears.
She then asked to examine Isaac. She looked inside his mouth and said “I think he may have a tongue tie.”
“What’s that?” I asked.
“It’s when the tongue is restricted by an overly thick or short frenum and cannot function effectively. Its a mid-line defect. It can be fixed. He seems like he can push his tongue out past his lip so I’m not sure it’s even a tongue tie but I don’t have any other options for you. There is a GP who snips them. I’ll give you a referral to go in and see her for a second opinion.”
What is tongue tie?
I was overcome by emotion. I felt so relieved that someone had even given me an option for a second opinion! When I got home I jumped on the computer and googled ‘tongue tie’. Pictures of babies with Y-shaped and snake-like tongues filled my screen. I was flooded with disappointment. Isaac’s didn’t look like that. I began reading an article from the Australian Breastfeeding Association (ABA) about tongue tie.
The ABA explained what it was and listed the symptoms:
- nipple pain and damage
- flattened or misshapen nipple after breastfeeding or a compression/stripe mark on the nipple at the end of a breastfeed
- the baby keeps losing suction while feeding or falls asleep
- the baby makes a clicking sound when feeding
- the baby fails to gain weight well
They were all so familiar! It had to be it. I called the Specialist GP (SGP) right away and made an appointment to have the tongue tie “released”.
The following week we visited the SGP. After I explained what we had been through, she examined Isaac quickly.
“This is not what I would consider a tongue tie.” She said flatly.
“What do you mean?” I asked, starting to feel hysterical.
“Well, I can see the slightest restriction in the posterior. Although it’s not tied to a degree that I would normally feel needs to be released.”
I felt the tears coming. “Please,” I said desperately. “Can you do something?”
She looked at me for a few seconds blankly, then quickly agreed to “snip” the tie. She explained that she would use a pair of surgical scissors to make a slight cut across the lingual frenum (the stringy bit that holds the tongue to the bottom of the mouth). There would be a bit of pain, maybe a drop of blood, and Isaac would be fine to feed straight away which would likely comfort him and relieve any pain. No after care was required.
The GP performed the release and we were quickly ushered out of the room so she could see her next patient. I sat in the hallway of the clinic and attached a hungry Isaac to my breast. He latched immediately. Amazingly, and to my complete surprise, there was also no pain whatsoever. I looked up at my husband with my mouth agape.
“It worked!” I squealed.
The following 2 weeks were absolute bliss. Isaac fed effectively and there was no pain. The symptoms he had been experiencing after our previous feeds also seemed to dissipate. We were able to go to the shops and take walks. I breastfed in public and while out and about and felt confident. His weight continued to increase and he also seemed very content. It was such a relief!
We began attending a mothers group in that time and I got talking to another mum one day who mentioned to me that she was battling painful feeds and admitted that her nipples were completely shredded.
“I have no idea what’s happening. This can’t be normal.” She said, her eyes desperate. I shuddered.
“That’s what happened to me!” I cried.
We spoke at length and I told her about my experience. She had never heard of tongue tie either and said she felt crazy because no one would listen to her and she was being made to feel their problems were all a normal part of the breastfeeding journey.
I felt so upset that someone else had been going through the same thing as I had and I was extremely bothered that there was absolutely no information available at the hospital or at the maternal and child health clinic, and that there were virtually no professionals that could identify and treat it! It felt completely bizarre to me.
The tipping point for me came when Isaac was two weeks post his “release” – 9 weeks old. I latched him on one afternoon as normal and began to feed him. One hour into the feed I looked down and he had fallen asleep. I felt panicked. I took him off the breast and felt a stab of pain. My nipples were grazed. “What is happening?!” I thought hysterically. As the days went on, the familiar symptoms began to return. We ended up using nipple shields again and I was waking up at two hour intervals throughout the night to express milk.
Tongue tie growing back
I began giving Isaac expressed milk in bottles more regularly to give my nipples a chance to heal. I noticed that every time Isaac took a bottle he made a loud clicking sound as he sucked. He also had terrible pain after feeds and would cry and moan. It was heartbreaking. I spent hours desperately trawling the internet for answers. I was not giving up until I knew what was happening. I read articles on changing my diet, eliminating foods that could be upsetting the baby, SNS feeding tubes, tips for increasing skin-to-skin contact, nipple infections and breast pain, flat nipples and how they affect a babies latch and a whole host of other reasons why breastfeeding wasn’t happening for us and why my baby was upset. It all just didn’t sit right with me. I had also started getting unwanted feedback from friends, family and associates.
“Just put him on formula.” they remarked.
“No. I don’t want to. I need to understand why this isn’t working.”
After our recent experience with the release, I just instinctively felt that something was physically wrong with Isaac’s tongue. I then came across a thread on a mother and baby forum from a month earlier about tongue tied babies. Reassuringly, these women had experienced exactly the same symptoms as us, and like me, wanted answers!
I noticed that someone had also had their child’s tongue tie snipped like we did, but it apparently “grew back” after a few weeks. Following the advice of a friend, she had been to see a paediatric dentist who had released the tie permanently using a laser method. There were dozens of comments that followed from happy and relieved parents that had also been to see Dr Amazing* with their children to have the procedure. People were even travelling from interstate to see him.
“He’s the best in the business!” One poster wrote.
“He’s the only one in the business…” I thought.
As there was quite the wait to see the paediatric dentist, Dr A (approximately 3 weeks), and my milk had stopped transferring properly through the shields during breastfeeds, I completely switched to bottle feeding Isaac expressed breastmilk. Despite the demand of now having to produce a minimum of 800mls of milk a day (exhausting!) it was such a relief for me to not be battling to breastfeed. I felt comforted by the fact that we had our appointment coming up and was told by many that I’d be fine to switch back to breastfeeding as Isaac was still quite young.
On the day of the appointment my husband and I were nervous. Dr A assessed 13 week old Isaac and talked us through the procedure. One of us would have to hold him down so the laser didn’t go anywhere it shouldn’t and we would notice a burning smell. We were unsure. Dr A explained that Isaac had both a tongue tie and an upper lip tie. He said that Isaacs tongue tie was a stage 3 posterior tie.
“Is that bad?” I asked.
Dr A advised that a posterior tongue tie was a tie that occurred behind the front part of the frenum and in the middle of the tongue rather than at the front or at the tip of the tongue (anterior).
This was not as easily identified as an anterior tie, hence why no one had thought to consider it an issue and why in a lot of the photos I had seen during my early online research endeavours, I could not make the connection with Isaac’s tongue. He also explained that a Stage 1, 2, 3 or 4 label was given to diagnose how tight or restricted the frenum was, but this didn’t at all translate into how that person, baby and/ or mother may be affected. He went on to say that he had seen people (children and adults) with Stage 4 posterior restrictions that seemingly had no issues whatsoever and so it wasn’t picked up until later in life when they were having work done as a result of tie-related dental health problems.
He also said that on the other hand, he had seen babies with Stage 1 posterior ties who had horrific reflux, mothers with bleeding and cracked nipples (amongst other things) and who had been denied releases by SGP’s despite all of this. He went on to say that tongue and lip ties often went hand-in-hand and that those that have ties often also have high-palates (Isaac had this and gagged every time we put our finger into his mouth to check his suck reflex in those early days). Dr A said that an un-released tie might (or might not):
- affect breastfeeding
- interfere with the introduction of solids
- impact airway development and function
- digestive health, orofacial development, dental health, posture cause neck, shoulder or orofacial pain; and
- impede speech development.
My husband and I quickly discussed our options and decided to proceed with the release. It was upsetting to watch and Isaac cried a lot. Remarkably, only a short time later after a feed, he was happy and smiling again.
Following the procedure, we were given an after-care plan which involved daily “exercises” for us to do with Isaac during the healing phase to ensure the frenum healed correctly and didn’t grow back as thick and tight as before (which can apparently happen if stretches aren’t done properly while its healing). By the time we had our 2 week post-release check-up appointment, Isaac was permanently on bottles and had lost interest in breastfeeding.
Amazingly, the clicking noises he was making previously during his bottle feeds ceased and with the help of a paediatric chiropractor (1 appointment), so did his discomfort symptoms. I referred my mother’s group friend, whose son was younger than Isaac, to Dr A and she was absolutely amazed at the results. She went on to breastfeed her son for 12 months after and said after that time that she felt so grateful that she had finally got the opportunity to be able to choose to do that.
These days Isaac is a bright, happy, loving and healthy 3 year old, however he does have a frontal lisp. This is likely related to the tongue tie however may (or may not) resolve on its own as he develops.
I have noticed that in recent time, and since my experience with posterior tongue tie, that there is absolutely and without a doubt, a tongue tie epidemic. I have since witnessed six more friends and associates battle through varying types of tongue and lip ties with their newborns babies, most suffering in silence because, due to inadequate knowledge and support from professionals, especially in those crucial days and weeks following birth, they either feel they are crazy, “it will get better”, or that breastfeeding is “just not meant to be”.
Fortunately, I have been able to help others receive support and seek treatment through openly and honestly sharing my own experiences with them. I have also noticed that there is now a lot more helpful and updated information available, better support and more up to date and relevant resources out there at places such as M&CH centres, hospitals and online.
However, there is still such a long (long) way to go, specifically in the areas of research and education amongst medical, post-natal and maternal health professionals, in how to both diagnose and treat the defect as well as provide more adequate and improved support to those living with and for the women battling through tongue tie and upper lip tie.
Some helpful resources:
*Name has been changed.
^Images via Pinterest.
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