#BreastfeedingStories Featuring Topsy Turvy Tribe


As Parents There Is Nothing More Powerful Than The Stories We Share..

Welcome back to the #BreastfeedingStories guest post series, an opportunity to bring together stories from other mums who have breastfeeding experiences that they would like to share.

This weeks guest post features Andrea from Topsy Turvy Tribe who shares her experience of tongue tie with two babies, and the challenges that go with it.

I was eleven days overdue with my second child when I finally began to feel contractions.  I was relieved, but there was one thing that I was dreading; it wasn’t giving birth, or worrying about my baby, the one thing that filled me with fear, was breastfeeding.

We all know breastmilk is just fantastic; jam-packed full of vitamins and disease fighting substances. We are preached to that ‘breast is best’ the most natural and best start for our babies.  Sadly, in reality this isn’t always the case and the pressure that new mummy’s feel, that I felt to breastfeed, is immense.

I was a ‘failure’ with my first child and it almost sent me over the edge being unable to breastfeed him.  When Chaos was born I just assumed I would breastfeed.  I never ever imagined that I would be unable to feed my own baby.  But breastfeeding hurt.  It hurt a lot. After three days Chaos had lost 13% of his birth weight. Way too much.  We were admitted to hospital and he was prescribed formula top-ups and fed through a nasal tube.  I was mortified.  It was my fault.

We were in hospital for 3 days, during which we were continually told what great positioning we had. Chaos put on more weight at home.  I was so determined to exclusively breastfeed, to give my baby the ‘best start.’ I dropped the top-ups as soon as I could.

We saw every professional imaginable.  Went to weekly breastfeeding clubs, asked everyone for help with positioning, peer supporters, hospital infant feeding coordinators, other new mums…  I had my boob out in public more times that I care to mention to try to get some help feeding my baby, but it still hurt.  Not one of the ‘medical professionals’ I saw actually examined Chaos.  I had to try to find out for myself so I investigated with my old friend, Dr Google.  Every forum I went on, every article that I read and researched on the internet pointed to one thing, if it still hurts after an initial period of adjustment and the positioning is good (which I was told repeatedly it was) then it was possible Chaos had a tongue-tie.

Topsy Tuurvy Tribe Pic 1

For those of you who have never heard of a tongue-tie before, it is when your frenulum, the small piece of skin on the under side of your tongue is attached more than it should be; restricting the movement of the tongue.  There are obvious tongue-ties, Anterior ties, where you can see the front of the tongue is attached to the underside of the mouth.  Then there are Posterior tongue ties (PTTs), which are far harder to detect and not always obvious, when the back of the tongue is too restricted.  A baby with a PTT may well be able to stick their tongue out, but they may not be able to move their tongue in the peristaltic wave action that is needed for them to be able to effectively breastfeed.  Read my post here (https://topsyturvytribe.wordpress.com/2016/08/23/breastfeeding-and-posterior-tongue-tie/) on how to identify a posterior tongue tie.

Armed with my theory I visited my local La Leche League breastfeeding club.  The leader of the group, who herself was an expert IBCLC (Internationally Board Certified Lactation Consultant) confirmed my theory.  Finally!  Chaos had a very restrictive PTT and he needed it dividing (snipping). In days gone by Midwives used to check for tongue tie at birth, snip it there and then; apparently, every midwife kept one long sharpened fingernail to slide across the base of the tongue at birth to get rid of any troublesome ties.  However, it would seem that with the popularity of bottle feeding in the sixties, identifying and dividing tongue ties became a lost art and now only a select few can perform the procedure.

I was referred to see my doctor and finally to the NHS tongue tie clinic at my local hospital in North Kent.  Before going I was warned that the doctor in charge did not believe PTT’s existed!  What a waste of time.  The doctor failed to agree that Chaos had a tongue tie and I left distraught and despondent.  So I employed a private IBCLC to divide Chaos’ PTT.  A small pair of surgical scissors, a swaddle and a snip.  A very small amount of blood and a breastfeed straight after and Chaos was fine…I was still in pain.  We saw the IBCLC a week later at her London clinics and she re-snipped Chaos’ tongue.  We also went to East Sussex to see a specialist NHS midwife who snipped his tongue for the third time.  Still no change.

There are a few theories with PTT’s, sometimes they re-attach and sometimes more of the deep-rooted sub-musocal section of the tie comes forward and needs to be divided again.  Whatever the case was with Chaos, despite three divisions, it still didn’t work.  It had taken 10 weeks to get to this stage.  I had to give my nipples a break and hope that Chaos would re-learn how to suck effectively with his more mobile tongue.  I hired a hospital grade breast pump and began a 3 hourly schedule of pumping.  Chaos took to the bottle easily.  After two weeks of pumping and trying again to feed, I was crying in pain.  After 12 long weeks, my nipples were shredded and so was my resolve.  In the end my husband had to beg me to quit breastfeeding for my own sanity and his!  I felt so terrible that I couldn’t feed my baby, so guilty and ashamed.  It took me a while to realise that switching to formula was the best thing ever.  For the first time since he was born, I could actually being to stop worrying about feeding and begin to enjoy being a mummy..

Topsy Turvey Tribe Pic 2

So when Mayhem came into the world 20 months after Chaos, I wanted more than anything to successfully breastfeed.  As soon as he began to feed I felt the same old familiar pain.  His tie was divided privately at 4 days old, again at 10 days old and a third time by an NHS expert surgeon at 10 weeks old.  The pain was not as excruciating as with Chaos, so we carried on feeding.  Even if I considered switching to formula Mayhem could not or would not take a bottle.  He was a boobie kind of baby! So I did what most mummies would do and I got on with it.

Mayhem was a constant feeder, in fact I carried him in a sling because otherwise I could not have moved, he fed a lot!  I wish I could tell you that the pain subsided as he grew but it didn’t, but my mind was on other things though as Mayhem became increasingly unwell. He dropped from the 70th to the 5th percentile, despite eating like a horse.  At 11 months we discovered the reason he was ill, he had a large benign tumour and needed a life-saving operation to remove it.  Throughout our lengthy hospital stay, invasive procedures, general anaesthetic, biopsies, there was one constant; Mayhem was so comforted and happy breastfeeding.  I truly believe that breastfeeding saved his life.  He would have lost so much more weight, maybe too much, had he not had his ‘boo boo’.  Mayhem has gone from strength to strength.  It has been a difficult journey breastfeeding with tongue tie, we have our moments but he loves it and we are still breastfeeding now at 22 months.

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If you’ve got a breastfeeding story you would like to share as part of the series please get in touch with me at mypetitcanard@hotmail.com or on Twitter. I’d love to help you share your#BreastfeedingStories.

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    • August 31, 2016 / 8:19 pm

      Such a pleasure! So pleased you shared your story. There arent enough posts out there about tongue tie. I am sure this will help others parents out there that may be experiencing something similar 🙂

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