All tied up.

The topic of tongue and lip-tie has come up quite a few times lately in regards to it's effect on the breastfeeding relationship and the health and well-being of both mama and baby. I asked my friend Joanna to share her breastfeeding journey from this past year. This is her story.

A year ago my husband and I welcomed our beautiful son into the world. Nursing my baby was something I was passionate about and was so looking forward to creating that special bond with my new baby.

I started breastfeeding him a few hours after his birth and it hurt. I remember my doula saying to me a million times “If it hurts, you’re not doing it right.”  So I continued to try to improve his latch. Several hours after he was born the pediatrician came to check him out.  The first thing he said was “Your son is tongue-tied (ankyloglossia – medical term), he needs his tongue snipped or you won’t continue nursing.  Make an appointment with my office.”

I had never heard of this before.  Our Lactation Consultant (LC) confirmed his tongue-tie and at a week old we had our son’s tongue-tie snipped (frenectomy).  The procedure didn’t seem to bother him at all.  The anterior tongue-tie was easy to diagnose once you knew what you were looking for: our son’s tongue was heart-shaped at the tip, he couldn’t poke his tongue out, and he had very restricted movement with his tongue.  Basically the frenum (the skin under the tongue) was tight and short.  Straight away I could feel a difference nursing, but it still wasn’t painless.

By 7 weeks of age our son was gaining weight beautifully, but I was still having issues with nursing. We’d been battling thrush for 5 weeks due to the nipple damage my son was causing while nursing and he made a clicking noise with his tongue.  He would also lose his latch frequently, and he was always full of gas which made him very cranky.  After nursing my nipples were always flat and the tips of them blanched.  When he wasn’t nursing and wasn’t asleep he was unhappy – despite being held in arms constantly. My LC came back at my request and her conclusion was that his latch was still poor, he couldn’t get his tongue forward enough to get the nipple into the back of his throat and that’s why we were still having these issues – his tongue was still restricted.  She advised us to continue to work on the latch.

When our son was 9 weeks old he commenced a breast refusal that lasted 10 days.  He would only nurse at night when he was asleep.  I was expressing milk and we were syringe feeding him during the day.  When he finally started to take the breast again during the day, he then became a very fussy nurser.

At three months of age, the thrush had gone but we had been dealing with severe gas issues in our baby for two months and I had no fuel left in my tank.  Every night he had wakeful periods on and off from 2am until mid-morning – he was writhing around in pain and passing gas.  We’d seen a chiropractor and a craniosacral therapist, tried Chinese herbs, and colic remedies, but no one could solve the gas issues.  The paediatrician labelled it colic and also said reflux medication might help.  The doctor requested x-rays and ultrasounds of his abdomen just to make sure nothing serious was wrong.  The results were all negative. We were frustrated and burning out.

I then went to Australia with our son to get some much-needed support from my family.  We came back to Canada when our son was 5 months old and was still very gassy but the nipple pain had reduced considerably and he was nursing much better. However a few weeks later he went on another breast refusal.  It was much the same as last time and I was very frustrated.  Nobody could suggest anything that I hadn’t already tried, such as nursing in the bath, wearing him, staying at home in bed etc.  I finally managed to get him nursing during the day again by nursing him to sleep for his naps while standing up, and rocking him in our ring sling.

Nursing in one of our carriers at the Edmonton Heritage Festival – 6 months old

When our son was 6 months old I felt pretty good about our nursing relationship, everything was going well and he was taking in lots of milk.  Then at 7 months of age I started to get regular pain while nursing again.  I wondered what had changed and why it had to put a damper on my one month of nursing bliss!  I got talking to a new friend who is a lactation educator and she asked if he was lip-tied (maxillary fraenum).  I remembered my LC had checked for that when I’d had her back to my house when our baby was 7 weeks old and she had said no.  So I told my friend that he wasn’t.  She insisted on taking a look and her reaction was pretty obvious – he was severely lip-tied.  She explained that his lip-tie was preventing him from flanging out his top lip to create a good seal and take in enough breast tissue.  He had been using his gums to hold the latch.  The reason why I was experiencing more pain now was that he had cut his top teeth he had to use his teeth to maintain the latch rather than his gums. She told me that if we didn’t get the lip-tie fixed he would most likely prematurely wean.

So I began a search. Who could fix his lip-tie?  No one seemed to know.  While I had this fantastic network of LCs, lactation educators, nursing moms, and IBCLCs, no one could suggest anyone to take my son to.  Finally after 2 months of searching on the internet I found a pediatric dentist in Albany, New York, one Dr. Lawrence A. Kotlow. At the same time my friend, Natasha, from Natural Urban Mamas, posted a link to a blog from a mom who had flown halfway across the States to take her daughter to this dentist.  As I did more research I discovered that mothers were flying from all over the USA and the world to take their infants to see Dr. Kotlow for tongue-tie and lip-tie revisions.  Dr. Kotlow has easy-to-understand instructions on how to diagnose tongue-ties and lip-ties in your own child, and low and behold, I came to the conclusion that our son had a Class IV lip-tie (the most severe – the lip-tie goes in between the two front teeth, causing a gap, and is connected into the hard palate) and a posterior tongue-tie (where the tongue is thickly and tightly tied at the base of the tongue).   Not only that, I also came to the conclusion that all of our son’s gas issues, colic behaviour, breastfeeding refusals, fussiness nursing in public (and in general), plugged ducts, thrush, and my nipple pain was because of both of these ties. Dr. Kotlow has written a publication linking colic/reflux issues with tongue-tie and lip-ties.  Reading this article was like reading a story about my child.  The marvellous thing about Dr. Kotlow, is that he uses a laser to revise the tissue in the mouth.  Laser is fast, pain-free, and creates an anaesthetic effect.  It takes a very short period of time to heal, involves no sedation, and can be done in the dentist's office.

By this time our son was 10 months old and he was also having issues with speech and with eating solid foods.  His speech was impeded because his tongue couldn’t move to the roof of his mouth, and this same tongue restriction was not allowing him to chew food properly.  Food mostly got spat out half-chewed or he gagged on it.  His nursing was also getting worse with my nipples getting more and more damaged and I wasn’t sure how much longer I could deal with the constant pain.  He was pulling off the breast constantly, gagging while nursing, and was also leaving teeth indentations in my areolae as he attempted to maintain a latch.  We made the decision that we were going to travel to the other side of the continent to see Dr. Kotlow!

At the same time I met a local mother whose past year roughly reflected what I’d been going through, except that her 10 month old had struggled to maintain weight due to frequent and lengthy breast refusals. They were scheduled to visit Dr. Kotlow a week after we met, but before she left for Albany we decided to make one last-ditch effort to get the revisions done locally. We both called dozens of dentists in our town and couldn’t find anyone that would use laser to revise tongue-ties and/or lip-ties on infants under two years of age.  She had even seen a pediatric plastic surgeon who said he would do the revision using a scalpel under general anaesthetic, but not just so she could continue to breastfeed her son.  I’d have to wait nearly a year to get the surgery done. This was not a viable option for me on many levels.

My new friend made the trip with her son to New York State to see Dr. Kotlow and we went a month later. Both of us are amazed at the profound difference it has made in our sons! Dr. Kotlow is committed to helping mothers have pain-free nursing and his office staff are just as supportive. The procedure took 10 minutes. My son came back to me drenched in his own sweat, red-faced, and crying, more from being away from me than any pain and an hour later he was eating, playing, nursing and then sleeping!

Nursing was unbelievably different.  The first thing I noticed was how wide he could now open his mouth.  Dr. Kotlow said the lip-tie was so tight that it prevented him from having full range of movement in his jaw.  I also noticed how much more breast tissue he had in his mouth and that his top lip was flanged outwards!  But the best thing I noticed was that it was pain-free! Yay! Dr. Kotlow checked him out the next day and showed me the stretching exercises we were to do four times a day for 14 days.  These exercises are critical post-procedure as they stretch the revised area to ensure the tissue does not heal back together.

Since the procedure was done we have noticed big differences in our boy.  Not only has his nursing improved but so has his speech and eating.  He is pronouncing sounds much more clearly. You can now see him use his tongue with a much wider range of movement to chew food.  He is no longer gagging on food and his smile is different too! He is also able to suck out more milk with each nursing session and sleep more soundly.  He isn’t losing his latch anymore and he isn’t fussing at the breast while nursing. He has even started to ask me for milk by signing ‘milk’ – this is a totally new experience for me and something that melts my heart. And I am still pain-free!

It has been a frustrating journey and definitely not the nursing journey I envisioned having when our baby was born.  It is amazing how many people I have met and am continuing to meet who are also having nursing issues due to tongue-ties and/or lip-ties.  While anterior (the tip of the tongue) tongue-ties are easily diagnosed by pediatricians and LCs, posterior tongue-ties and lip-ties remain poorly diagnosed.  Lip-ties are much easier to diagnose once the top front teeth have erupted through the gum.  However, once diagnosed, the real problem is finding someone to do the revisions locally.  Just recently, a local dentist, Dr. H. Sekhon from Lewis Estates Dental Centre, performed three lip-tie revisions using laser.  I am grateful that there is now a local dentist performing lip-tie revisions and would love to see him pursue further training with Dr. Kotlow.

Throughout our nursing relationship, many people have questioned why I have decided to continue nursing.  I guess stubbornness and determination on my part comes into play here, but I also believe that my son has a right to nurse for as long as he chooses to. Of course I wouldn’t have been able to do it without the love and support of my husband and family in Australia, and the wonderful network of babywearing and breastfeeding mamas I have found in my local area. I feel nursing strengthens our bond and our relationship. I am so grateful that we now have the opportunity to continue our nursing relationship into my son’s toddler years.

 

Joanna is a mother of a one year old boy, Xavier, and a 18 month old puppy, Bailey.  Her and her husband came to Canada from Australia almost three years ago for an adventure and to further their careers in environmental management with the public service.  Both are passionate about sustainable development and love the natural environment.  Joanna has studied journalism, international relations, biological sciences and environmental management and has graduate and post-graduate degrees in these fields.  She is a straight talking Aussie who loves to be around people and animals.  She likes to stay fit by playing many different sports, wearing her baby on her back, and hiking in the Rockies. Joanna is now pursuing her passions for babywearing, breastfeeding and birth support in between and while caring for her family.