Tuesday, 16 April 2013

Triumphant Tuesday: Breastfeeding with Upper Labial Tie

Inside your mouth, there is a small fold of tissue which runs between your upper lip and gum (you can feel it with your tongue). This is called the maxillary labial frenum.  Most people have no significant frenum attachment, but sometimes this frenum attaches further down the gum, or runs between the front teeth and attaches behind them, causing restricted movement of the upper lip.  A baby with this condition may find it difficult to latch to the breast effectively. Once latched, his upper lip may be tucked inwards, resulting in a shallow latch causing pain for mom and insufficient milk intake for baby.

You are about to read the story of one such baby, Tom. He had an upper labial tie, and it was left undiagnosed until he was 20 months old! Yet he has never received a drop of formula. How did his mother assure this? Read on.

“Breastfeeding is definitely an emotive subject for me. I tried so hard to be successful.

Tough from Day 1

I couldn't get a good latch from the start. My son Tom was born 3 weeks early and weighed just under 6lb – he was tiny! He would never take enough breast into this mouth. We tried nipple shields yet I still ended up with huge cracks. I dreaded every feed and would be crying with the pain while he fed, which was never for less than 45 mins.

It’s hard to describe or compare the pain, it’s a bit like labour pain; like running a cheese grater over my breasts. It was a sharp, stabbing pain that didn’t stop. I dreaded feeding times. In between feedings my nipples would scab over a little and then it would start all over again! When the water hit my nipples in the shower it was really painful.

Patronising health professionals

I then saw numerous nurses, doctors, midwives, lactation consultants (travelling over 1500km one way! - 3 return trips). Everyone looked for tongue tie and high palate but not an upper labial tie. Many of the health professionals said that my nipple cracks were among the worst they had ever seen (I still have scars around the nipple 2 years later!)

The doctor I saw for my 6 week check up the hard work I’d been doing to breastfeed and said “you need a break too; it is ok to give him formula, even just one bottle a day – at night”. Undermining and not very helpful.


It wasn’t long before my badly cracked nipples led to mastitis. It started with a blocked duct which was a hard, aching lump. I massaged it for a few days and thought it had gone, but then my breast got a red warm area on it. Fortunately I promptly saw a Breast Surgeon who caught it early and prescribed Flucloxacillin.

We then started waking up near midnight to the sound of Tom (at 3 weeks old) vomiting and choking on the most vomit I’ve ever seen from such a tiny baby. It covered the entire inside of the bassinet and was a horrible yellowy colour. I figured out it was due to the just started Flucloxacillin.

But the fun and games were only just starting. I then got a staph infection in the nipple. Add to that vasospasm, 4 courses of antibiotics, topical antibiotic ointments and creams to be applied 3 times a day, then when that did not work to get rid of the staph - a long term course of antibiotics for 6 weeks. Thrush was always suspected but the lab results didn’t show it – we still treated my baby and myself for it anyway.

Pumping to the rescue!

To heal the cracks that had been there for weeks I was advised to pump to "rest my nipples" (Tom was 3 weeks old). Due to the staph the MASSIVE cracks never healed and I never could latch him on without extreme pain. So I only “breastfed” till he was 3 weeks old, and then pumped exclusively.

When I started pumping my nipples were still painful. It took a while sorting out the right size of breast shield/flange. The nurse gave me really large ones, as that is what they said my size was, but I was doing 40min long pumping sessions and it was taking forever to get the milk out. Plus the cracks were not healing and it may have even made them worse, since I had to have the pump on the highest setting! Here’s a photo of my "Strawberry milk". The cracks on my nipples would, every now and then, open up and bleed. Strawberry milk was the result. The milk in this photo had settled and separated. Of course I still fed it to Tom (even though my husband was hesitant) - I would never waste milk!

I later stitched to the standard size that comes with the pump and it was much better for getting the milk; I was able to use the pump at half the setting I was before which was better for the pain.

Pumping was relentless. I pumped 7/8 times a day whilst I persisted trying to latch Tom. I was glued to the pump for a total of 4 hours a day. I pumped in airport terminals, on planes, in moving vehicles, shopping centre breastfeeding rooms amongst other places. I definitely looked a sight, that’s for sure! I had a pumping bustier and a handsfree pump - the tiny Medela Freestyle. So I could walk around the house and get stuff done while pumping (although unfortunately, not eat - for some reason I always felt nauseated if I considered eating while pumping!) My family called me a cow.

I kept everything documented. Every ml that I pumped was recorded and the times, plus times and mls he ate. What I stored, when the stored milk was used I recorded it all!

This photo shows me finger feeding my breastmilk to Tom when he was 3 weeks old. We did this method of feeding for 2 months. It’s hard work, but the best method to use to avoid nipple confusion.

My routine looked like this: Tom would finger feed, taking 45 mins. Then I would settle him to sleep. Then I would have to be attached to the pump for 40 mins or so, then clean, pack and store the milk and parts – about at extra 10 to 15 mins. Plus all the recording milk amounts and working out his needs and what I needed to pump.

It was really stressful thinking about my supply in the early days! I was always worrying about Tom crying or needing me while I was hooked up to the pump. It was not too bad when he was little (he fit on my chest in between the shields or in my lap!) – but as he got older and bigger and could move around it got harder. Plus I couldn’t hold him as easily while attached to the pump. I used to get up in the morning (set my alarm) before I knew Tom would be awake, just so I could get in a peaceful/non stressful pumping session. The sessions that I had to do while he was awake were the worst/most stressful!

Unsupportive husband

My husband could see how hard it was on me and would say “You need a break – just put him on formula”. My parents and friends often said the same thing. It pissed me off! My husband already has 2 children from a previous relationship, who were both formula fed and his attitude/rationale was that they’re fine so formula is just another normal option to choose. It felt like he didn’t have the faith in me to feed Tom the way I was meant to. It actually strengthened my resolve to not turn to formula. I needed something to go my way (that I could succeed in) after Toms disappointing, traumatising birth.

However I admit, it was very tempting to take the easy route! Although I never bought a full can of formula – I bought a box of stick packs, about 6 feeds worth. Maybe I did that knowing that if I did have to resort to formula I didn’t want it to be permanent! Having formula in the house hindered me in that – I would think about how easy it would be to not be in any pain, not be feeding for 40mins/1hr per feed. I even got it out and sat it on the bench. I came SO close to making up a bottle!

But it also helped having it there because once I’d resisted using it once, it got easier and easier to keep resisting.

Nursing my sister's baby

When Tom was 10 months old I had tried breastfeeding my sister’s 4 month old daughter. It was completely pain free!! It felt different to ANY time I had ever breastfed Tom. It felt really nice and I could feel the milk being drawn out by her. This sent alarm bells ringing in my head.

I had for a while suspected Tom had an upper labial tie as his frenulum is quite large. When he was around 20 months and his 2 front top teeth had come through – he had a gap between them. We took him to a paediatric dentist, I had recently learnt of, who uses laser surgery. He confirmed my suspicions of the tie. I finally felt vindicated! It wasn’t me! And it SHOULD have been picked up by all of these people who examined me and him!

Despite all this - my gorgeous boy has never had a drop of formula pass his lips. There were times I wanted to give up and I still have the unopened formula in my pantry to prove it. But my wish to provide only the best for him has outweighed everything else.

Breastfeeding has cost me a lot more money than formula feeding ever would. But I'm so proud to say he's only ever had my breastmilk. I've even been able donate some of my freezer stash to a friend who could not pump the amounts I could.

This journey has been the Hardest experience I've ever had, but definitely the most rewarding! I wish more women would see pumping as an option if they “cannot” breastfeed. It was not easy and did come with its own set of challenges, problems and worries. Such as; the pump sometimes causing pain, bleeding cracks leading to “strawberry milk”, constantly worrying about supply (as we know pumps are not as effective as a baby for long term feeding), packing and storing milk, freezer space, using the milk before it went past use by date, planning days, outings and travel around pumping and keeping breastmilk cold, creating and maintaining a daily record of times pumped and amounts at each pump session and amount ingested my Tom at each feed (a LOT of paperwork!), and amounts wasted (warmed up for a feed but not drunk :(

I am extremely proud of myself and the effort I put into providing only the best for my son; that even in my darkest times I never “gave in” and went for the easy option of giving him formula. It still amazes me that he has NEVER had any formula.

Breastfeeding is the normal and best thing for babies. There are so many health and emotional benefits – I think many of which are yet to be discovered. Why would you want to put a man made, nutritionally inferior replacement into your baby, when the real thing is so readily available?

Mothers who don't try

Mothers who don’t even try: I think they are majorly uneducated and uninformed. It disgusts me! They obviously think that formula is as good as breastmilk! It annoys me that people wouldn’t educate themselves about something this important! Then of course bub doesn’t tolerate this or that formula or gets terribly constipated or sick from the formula. Not to mention that the bub gets sick a lot more often!

Then there are the women who say “I tried to breastfeed, but it didn’t work, etc, etc”. They piss me off just as much! It devalues my entire journey when they say that. I’ve NEVER personally met someone who had as many breastfeeding obstacles (blood in breastmilk – cause not detected, undiagnosed upper labial tie in baby, vasospasm/Reynaud’s phenomenon with tricolour nipple colour change, extremely deep nipple cracks, persistent long term staph infection in cracks, possible nipple thrush, blocked ducts, mastitis, 2 regular courses of antibiotics then 1 long term 6 week course, exclusively pumping, supply worries) as me, but I made it work! Surely most other people can too!”

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Sara Louise said...

Wow go Mama! You deserve a medal. Thank you for sharing x

Onepoto Children's Centre said...

My journey with my son has not been as bad as yours. I had a c section 4 weeks early and a baby that was impossible to get a good latch (top lip was always tucked in). Only when he turned 1 did I notice he had a lip tie. No wonder his latch always felt wrong, my breasts never got "full" when he missed his night feed and he had poor weight gain. I was asking and asking for help and no one bothered to look! I reckon the only reason that my nipples didn't crack etc. is because he was my second baby and they pretty tough after 2 years of my first! When I rang health professionals to tell them what I found they told me not to worry and it doesn't effect anything! MMMMmmmm yeah right!

Jen Fera said...

Great story, thank you for sharing. My little girl had a slightly worse lip tie than that and went undiagnosed for 2 months. I love your perseverance, I am the same way. I hope to provide mine with milk until she's 2.

Fi said...

I'm so impressed by your perseverance! Great job! I had this problem with my daughter (now 4 months). It presented mostly as no weight gain and painful feeding. She took 6 weeks to gain back her birth weight and that was because I was formula supplementing. Without having a reason for my hind milk not coming in, he health professionals all told me that I just wasn't supplying enough and to switch to formula. It was hard to breastfeed 4-6 hours a day plus do 6 formula feeds but I knew that the formula would be temporary, even if they didn't. I researched the upper lip tie on my own, asked the doc, nurses, lc and was told that it had no impact on nursing. But, I tried phlanging the top lip at every feed (couldn't hurt and it was so simple) and 2 days later my hind milk came in. As soon as she regained her birthweight I returned to exclusive breastfeeding and she immediately had a growth spurt. She grew 8cm (3 or so inches) between 6-14 weeks and put on 2.3kgs (umm, about 6 or 7 pounds?). And all on my "insufficient" breastmilk! Lol.

JoleneS said...

I also had a very disappointing birth experience, and due to a previous breast reduction done a couple years ago I was not able to produce enough milk, My milk never came in for almost two weeks. I was pumping drops of breastmilk I would give to my daughter in a dropper, meanwhile my baby was getting formula and developed nipple confusion, even though I always tried breastfeeding before a bottle. She was a good latcher but never had the patience to suck and suck to only get a couple ml of breastmilk. The most I've pumped in a day is 20 ounces, I tried latching her for 3 months and she would cry like mad. We would both end up crying. I decided I didn't want to try anymore and just stick to pumping, it was just to frustrating for both of us. I was very depressed about that fact that I was not going to be able to nurse, but I accepted my situation and did what was the next best thing and exclusively pumped.

My daughter is now 4 months is getting breastmilk and formula, unfortunately I have never been able to produce enough. I ve had 12 cases of mastitis, yes, 12!! and have never given up, every time I get a blocked milk duct my husband begs me to stop. I've been through terrible pain, cracked nipples, bleeding, blisters, not having time at work to pump, you name it.

Reading your story motivates me to keep going, even though I dont have the support I need. And even though I still give her formula I know she is still receiving the benefits of breastmilk.

ruralrebellion said...

Your judgement of formula feeders is what is truly disgusting. Get off your high horse.

Unknown said...

Oh my goodness, feeling quite emotional as think I've just re-read much of my breastfeeding story - difficult from start, persistently shallow latch despite endless amounts of professional support, deep cracks that I'll forever have scars from, strawberry milk (and my daughter vomiting so much blood at 2 weeks old she was admitted to hospital overnight), repeated plugged ducts, mastitis, an abscess, thrush, endless antibiotics and anti-fungals...the list goes on. I survived through a year of breastfeeding using nipple shields and laid back breastfeeding, some pumping and a huge amount of stubbornness and belief i was doing the best for my baby. Never got to the bottom of the problem, then last weekend spoke with another breastfeeding mom whose baby son has a shallow latch and they discovered he has an upper lip tie. She was telling me how it can cause a gap between the two front teeth, a feature that's pretty obvious in my now 3 year old daughter and sure enough when I looked at her mouth she has an upper lip tie! I'll never know if it was the cause of all our challenges but it's a definite possibility. Formula was not the road I wanted to go down, but sometimes looking back I wish I'd been brave enough to make the switch, and wonder if it might have been the better choice for my family and my wellbeing. Yes it would be wonderful if we lived in a world where breastfeeding was the easy choice but I don't think it's helpful to pass judgement on other mom's decision to breastfeed on not - we cannot pretend to understand anybody else's person circumstances - and a new mom only wants what she feels is best for her baby and her family and should be supported to make whatever choices feel right for her so she can be a confident happy mother.

Amy L. said...

Thank you SO much for this! My two-week old was diagnosed with an ULT just shy of one week old, and we suspect he has a posterior to the tie as well. Breastfeeding is almost non-existent...I can rarely get him to latch. He was on formula and using the syringe (finger feeding and under a nipple shield) by the time we left the hospital. We found a specialist who will be treating his ULT with laser tomorrow (and also evaluating and treating him for PTT, too, if one is found). I'm holding out hope that we can establish a normal breastfeeding relationship. I never wanted to bottle feed, especially not formula. (We're working on my milk supply, too...so far, I'm only getting just shy of 2oz per pumping session, enough for my so to have a few meals of breast milk by bottle daily).

Sirikit said...

Nothing 'devalues' your 'journey'; why don't you just enjoy your own perseverance, martyrdom and self-righteousness? Why must you attack other mothers? For what it's worth, I agree and sympathise with your husband. Mind your own business, and leave others alone. If it's so bloody easy to devalue you, you must really be conflicted.

Karen Mitchell said...

While I agree that breastfeeding is the best for babies, I think that the attitude towards mothers who formula or bottle feed is disgusting. Here's my story, my daughter was born 2 weeks overdue by emergency Caesarian. Right from day one she didn't "latch on" and unhelpful nurses tried to force her by prying her mouth into the right position. We left hospital, both on antibiotics, hers for UTI and mine for early signs of mastitis and cracked nipples.
I persisted with breastfeeding, with a shield, for three months despite repeated mastitis and nipple infections but ended up in a clinic to "teach me to breastfeeding properly" as she was grossly underweight. I was given an inline feeder and a breast pump. All that was pretty useless as I'd lost my milk already and ended up formula feeding.
It was ELEVEN YEARS later that my daughter was diagnosed with ULT when she needed braces! Do I regret switching to formula? NEVER! Your child's health is the most important thing. At least now I know it wasn't my fault, and I made the right decision for me and my daughter. The blame lies with uninformed professionals and rabid "breast is best" expounders for laying a guit trip on those if us who are vulnerable.

lizabell said...

Kudus to you for your perseverance and achievement breastfeeding. However, your attitude gives breastfeeding mums a bad name. I fail to see the benefit of fighting to give your child the best nourishment for his body just to teach him to have a self-righteous, judgmental, condescending attitude with an incredible lack of compassion. That is way more toxic than formula.

Trinh Bitzer said...

I admire your strength and commitment and was very moved by your story until the last few paragraphs. I breast fed my son for 10 months and am now struggling to breastfeed my daughter because she has a lip tie. Good luck spending 4 hours a day at the pump when you have a 2nd kid to care for. I know plenty of highly educated women who choose formula because they are highly educated career women who have to go back to work and cannot keep up with the demands of breastfeeding and a career. We are lucky to have the option of formula so we, as women, can have a a career and kids. What is your level of education again? I have a masters degree in education. As a highly educated woman, mother of two and breast feeder, I think you need to realize that what was right for you isn't right for everyone and that doesn't make them stupid or worse of a mother. I agree with the above post, get off your high horse.

Unknown said...

Wow! That's quite a journey! I just got back from a lactation consultant (my 3rd) and she's the first among the 3 and 2 other nurses to catch the upper lip tie too. The 2nd lactation consultant caught the tongue tie and the first 2 caught the high palate. We had the tongue tie, according to the 3rd consultant it was not done fully, and now we have to go for the lip tie as well. Her upper lip has always been tucked in/rolled under when feeding, but I didn't know the cause of it. So now hopefully we can wean off the nipple shield. and by the way, we started the nipple shield because a large swath of skin had been completely gnawed off, with pink under flesh exposed. It was ghastly! The other nipple had perforations all along the base. People grimaced when they saw my nips.

Your perseverance is amazing. I want to breastfeed, but I would have given up in your situation. Also, no need to be so angry. :) Other people's failures at breastfeeding do not devalue you. You'll be angry all the time with that kind of outlook!

KatyF said...

I will agree with a few others here - your story is impressive. I came across this post as I suspect my son has an upper lip tie. In his two months I've dealt with low supply, thrush, mastitis, abscess, and near constant clogging. I'm trying to stick with breast feeding despite being so sore there are times I can barely hold my son. My story has not been easy so far, and I am proud I've made it through to this point... But the point is it's MY story and how others choose to feed their baby has nothing to do with my successes or failures. You of all people should understand that motherhood is hard. Feeding babies is HARD - why get down on someone who chooses a different path? Everyone out there is doing the best they can for their babes - please stop laying on the guilt and being so judgemental.

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