Tongue Tie

Once home I experienced extremely painful breastfeeding, totally excruciating and practically unbearable. We were reading as much as we could and searching for help via youtube tutorials and articles on different methods, positions etc.  Nothing helped and the pain continued to get worse with what felt like burning, stabbing, shooting pains in my breasts and nipples. 
 
The pain was not just during feeding but all day, before and after.  It was so bad that I couldn’t sleep properly, couldn’t wear clothes, couldn’t hold Eli properly either due to the pain.  I felt that something wasn’t right and it shouldn’t be that painful but everything I read made me think I had to wait to at least six to eight weeks to give it a fair go, given the many reasons for pain had included:  the baby needs to learn, the mother needs to learn, supply/demand needs to balance out, you could have a forceful let down, you need to try different positions, nipples need to harden, it can take some time to establish feeding. 
 
I decided six weeks seemed like a very good attempt and I would have to reassess at that point. I was worried though about how I could cope for such a long time when the pain was bringing me to tears and complete sobs as I tried to feed him, literally toe curling pain.
 
On 28 June we hired a private lactation specialist, to come to our home and help with what I had worked out was a shallow latch – he just couldn’t get the nipple further enough back into his mouth and the soft palate to feed effectively without rubbing the nipple and causing immense pain for me.  He didn’t have the problem of falling off or not gaining weight.  The session was very useful and was not just limited to feeding,  she showed us some better positioning which was helpful but the pain never decreased, it simply got worse with the overuse and blistering. 
 
I also had a British midwife to the house . Again, she did a thorough consultation for at least two hours, looking at the whole picture including sleeping, feeding etc.  She showed us positions and latch techniques as well which were good but did not stop the pain for me at all. I also had an hours phone call with a midwife in NZ going over different issues that might be causing the pain but nothing worked. I also contacted the doctor who had run the prenatal classes for any other idea.
 
I was able to describe exactly what it felt like – his latch was too quick and shallow on the wrong part of the nipple.  During this visit the lactation specialist examined his mouth and tongue and raised posterior tongue tie as a possible cause. She explained she was not an expert in this area but had a colleague in Delhi we could send photos to and skype with to investigate it further. We took photos and a video and sent them to Camilla.
 
On 27 July Eli had his six week check up with the pediatrician .  I raised posterior tongue tie with him to get any suggestions on how to take it further in Mumbai and see what he thought.  He didn’t examine his mouth for more than two seconds and told us that ‘posterior tongue tie is a concept only – it’s not treatable’.  We knew this was totally incorrect from our research including the NZ Ministry of Health and UK NHS websites. In NZ and many other countries tongue tie is a relatively common and easily treatable condition. Tongue tie releases are often undertaken  by a dentist, often in the early days and weeks of life.
 
On 28 July I skyped with Camilla Conti in Delhi, another lactation specialist.  This was an in depth consultation lasting an hour and a half, starting right from the pregnancy and birth, Camilla sought to establish whether there had been any trauma or lack of bonding with Eli which could effect feeding.   I described the symptoms and our situation and we even demonstrated feeding via skype and my nipples! 
 
I talked to Camilla and exchanged messages in which she confirmed that the doctor she works with in Delhi had seen the photos and video of Eli and had agreed that Eli had posterior tongue tie. On 2 August I skyped with Camilla again, this time about the post procedure exercises which are very important and essential to stop the tongue tie release wound healing incorrectly.
 
At this point I spoke with Camilla in Delhi again to take forward that option of flying up to see the dentist there (Dr Anurag Singh) who she works with and who has a proven record in this field.  We decided to go as soon as possible and flew up on 9 August. 
 
We saw Dr Singh on arrival who immediately confirmed Eli had quite severe tongue tie which was indeed restricting his tongue movement and therefore his latch and ability to feed.  We then visited the anesthetist at Max Panchsheel Hospital to discuss the requirements for the next day.
 
On 10 August we went to the hospital and Eli had his tongue and lip tie lasered. (Whilst in theatre  the health professionals looking after Eli found that in addition to tongue tie, he also had a top lip tie). The whole procedure took 10 minutes.
 
We couldn’t feed Eli for four hours beforehand due to the anesthetic.  There was no bleeding at all and it was successful.  Camilla spent a few hours post procedure with us (another baby had the same thing done) going over latching techniques, positions, and post-procedure exercises which are essential. She was also present in the operating theatre throughout (parents must leave after the babies are anaesthetised).
 
We had to stay an extra night in Delhi as the anaesthetist advised us not to fly the same day.  Two days post procedure, feeding felt much better, and a day or so after that it was entirely pain free.  There is a noticeable difference in the way Eli’s top lip can move, right up to the tip of his nose, and he can obviously now move his tongue around freely, especially to the roof of his mouth. We were sure that even if the procedure didn’t help his feeding (being 8 weeks old already I worried his habits may be set) it was still the right thing to do as it could potentially effect his eating and speech later given how restricted his tongue was.
 
As Eli was getting milk, I discounted the possibility of tongue tie.  I didn’t understand that there are various types and degrees of tongue and lip tie and that not all are obvious.  I made the personal choice to continue to breastfeed as I really believed something wasn’t right and we could possibly fix it.  I didn’t have an issue with supply and it appeared that Eli was doing almost everything correctly. 
 
There is immense societal pressure to breastfeed (to the point of guilt tripping mothers and brainwashing) and we all know that breast milk is best.  But – unless specific reasons for pain are more widely known about, and more support is offered here in India, mothers will continue to switch to formula.  I persevered to my absolute maximum because I couldn’t switch to formula without getting an answer on tongue tie. For my mental and physical well being I moved to expressing milk, and then using formula and expressed milk and breastfeeding for the last 10 days prior to traveling to Delhi.
 
We tried unsuccessfully to get Eli help in Mumbai.  The trip to Delhi was a necessity in order for Eli to receive the treatment he needed for posterior tongue tie.
Katie Arathimos
 
 

Leave a Reply

XHTML: You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>