I have always caught my frenulum when eating, sticking out my tongue and generally when moving my tongue around my mouth. I didn’t know it was called a frenulum, had no idea that it wasn’t normal for the piece of skin attaching my tongue to the floor of my mouth to be restricted. I reached the ripe old age of 38 and had no idea at all that I had a tongue tie (ankyloglossia) until I realised that my first child had a tongue tie and he got it from me.
I gave birth to my eldest boy, Chaos, at the end of February 2013, after a long two days of pain and over two hours of pushing. Many women say that giving birth is a magical experience…er, not for me, no thank you! The contractions, did not ascend me to a higher consciousness, they just hurt like hell, I did not orgasm during birth, God forbid, the only zone I was in was the ‘get-it-the-f*ck-out-of-me’ zone. The drug-free natural birth I had planned went way out of the window when the meconium in the waters meant I had to lie flat on my back the whole time with a foetal heart monitor gingerly strapped around my bump. After 6 hours of gritting my teeth I’d had enough and opted for the epidural, at least then I could talk and breath. My birth plan was out of the window. Another thing about birth…please someone tell midwives never to say, ‘you’ve only an hour to go now’…two and a half hours of pushing later and Chaos finally made his way into the world, screaming and shouting at his protracted entry into the world.
To be frank, I’d be screaming if I was him too, his head was so squished and he had been a bit stuck for a long time. I was so relieved to finally have him out, all that pushing, man, it’s like the worst constipated poop in the world ever! Oh yes, poop, we’ve all been there, yes, it does come out when you are pushing. Don’t care who you are, if you’re pushing that blooming hard, it comes out…the midwives just scoop it up, bin it and get down to the baby business.
The most hilarious thing about giving birth was hubbie, the ONLY thing hilarious about giving birth was hubbie, he was so disorientated seeing me in a huge amount of pain that he kind of lost it. At one point during the pushing I asked him to wipe my brow with a damp cloth. He couldn’t find the face cloth, or the muslins, which were at the top of my hospital bag, he ended up mopping my brow (or pouring water over me) with sopping wet maternity pad…got to love my man!
When Chaos finally did arrive, I had no doubt in my mind that he would be breastfed. Breast was best, breastfeeding was natural and it was free (yes, I am stingy and begrudge paying for something when you can get similar for free). What I didn’t realise was that Breastfeeding would be one of the worst experiences of my life and still is a daily struggle and challenge with 20 month old Mayhem.
I knew that something was wrong after the first day or so, websites, blogs and other mothers talked about being uncomfortable and feeling pain whilst your nipples adjusted to having the life sucked out of them but this was another level. Rasping, grating and mangling my poor, poor nipples. I persevered, I’m not a quitter, I’m stubborn to the point of stupidity. I wasn’t in hospital that long with Chaos, I asked the midwife twice to check the latch when Chaos wanted feeding. She did, said it was great and walked off. I’d moved from London to Kent and only knew one other mum who was breastfeeding, she went through a lot of pain in the first few weeks and gave me lansinoh, cool and heat packs for the books and breast shells (there are loads of products out there to help your nipples and boobs recover from trauma). Best of all, she reassured me that I should feel pain and it would get better. It didn’t. It got worse.
When your nipple is traumatised and grated and bruised it hurts and it just doesn’t get time to recover inbetween feeds. Poor Chaos was knackered. Overtime he tried to feed it was really hard for him, the average suck to swallow ratio is two, his was at least double that. By Day 3 I knew there was something wrong. He was never a chubby baby but he looked skinny. Babies aren’t supposed to lose more than 10% of their birthweight in 5 days. Scales and measures don’t tell the whole story but in my case I just knew that he wasn’t getting enough sustenance. First thing you do as a mother when your child is unwell. Blame yourself. Chaos was weighed at my request, they normally don’t weigh until day 5, but because I instead they weighed him. At day 3 he’d lost 13% of his birthweight. We were admitted to hospital. They tube fed him formula. I felt like a failure but knew he needed supplementing.
We spent 3 days in hospital, not once did any midwife, doctor or anyone at all check if Chaos had a tongue tie. ‘He has to learn how to breastfeed too’, ‘Flick your nipple in,’ ‘Grab your boob and present it like a sandwich, make it easy for him to latch on’, ‘He’s swallowing now, looks good’. Failure. It wasn’t easy, it wasn’t natural, it felt blooming awful but I persevered.
I attended every breastfeeding club I could, even went to a weekly one run by the hospital’s infant feeding co-ordinator, no, she didn’t check for tongue-tie either. Eventually, as it is sometimes, it’s down to a mother’s instinct and knowing that something was wrong I researched and discovered he had a tongue tie, with a little bit of help from my friend Dr Google. I read everything I could and found out as much as I could. I visited the La Leche League weekly club and saw the wonderful leader there who was an expert, an Internationally Board Certified Lactation Consultant (IBCLC). After taking a history and examining him she confirmed, thank goodness, the Chaos had a tongue tie. A wave of heavy guilt left me…it wasn’t just me being a whuss, it wasn’t just my low pain threshold, it was a blooming tongue tie. Posterior tongue ties are harder to spot. The tongue ins’t attached at the back but underneath and sometimes inside (submucosally).
Finally armed with my diagnosis I even went to see the local NHS tongue tie specialist. What a frustrating and demeaning waste of time, I was told that as Chaos could stick his tongue out past his lip he wasn’t tongue tied…this is an antiquated view that research has completely dismissed as being untrue. A tongue can still be restricted and be able to protrude past the lips. To be able to breastfeed effectively a baby’s tongue needs to squeeze the milk out of the nipple in a roller-like action, a peristaltic motion. Dr Bobby Ghaheri, a tongue tie expert explains it very well here.
Through all this I had made it seven weeks breastfeeding. I had initially supplemented with formula but then felt I had reached a stage where Chaos was getting enough and gaining enough and went back to exclusive breastfeeding. I was so determined to make this work I forgot about myself a little and just focused on the ideal of exclusively breast feeding. I was so so stupid.
I was getting pretty desperate and felt completely abandoned by the NHS. After Chaos was diagnosed by the LLL leader I went back to see the infant feeding co-ordinator, bearing in mind I had seen her at least weekly every one of the eight weeks since Chaos was born, she said she had not thought I was in that much pain. She simply didn’t think to check for tongue tie. ARRGGGHHH! I’m quite a polite person, didn’t want to kick up a fuss but my God woman, either buck up or get a new job. I think she got the message simply by my ‘look’. I never went back to the club.
I arranged for an IBCLC to come and assess Chaos, it was time to get the tongue tie divided, a polite way of saying it needed to be cut. She came, spent an hour, assessed Chaos and then left, I had an appointment with her in a few days in London to get the tongue tie divided. It did feel like somewhat of a money spinner and it saddened me to think that people would profit from me having to go private as the NHS Doctor had failed to keep current with his research. Apparently he was known in the area and I wasn’t the first distraught breastfeeding mother he had told a pack of lies to. Anyway, I went to the clinic in London and after a wait it was his turn. A swaddle, quick snip and breastfeed later…it felt the same. I wasn’t expecting an epiphany, a message from God or for it to feel much better, but a bit better would have nice.
I went back to the IBCLC clinic a week later in London, Chaos’ tongue was pulled apart as it had begun to reattach but no, still the same. Still painful. He used to fall asleep at the boob all the time. It got to the point where I fed him then didn’t dare to move in case I woke him up. He was exhausted and cranky, so was I. Every time I fed him it hurt. It was getting too much. Hubbie used to come home from work and find me on the sofa feeding Chaos, in floods of tears. I had never been depressed, never really understood it and hoped never to, this constant feeling of woe and pain was getting close though, too close. I dreaded feeding him, hated the thought of him waking up so I’d have to, tried to put him off feeding as much as possible but I couldn’t deprive him of food so I fed him. I wasn’t enjoying being a mummy. Hubbie put his foot down. He normally agrees with me, we pretty much think the same about big decisions, luckily, but he said I had to stop, for me. He was right, I couldn’t carry on breastfeeding. It was too much, after ten weeks of torture I had to agree. Sometimes it isn’t natural, it isn’t straight forward. There is so much pressure on new mums to breastfeed. I put way too much pressure on myself. In the end the best decision for me was to switch to formula. I slowly regained my sanity and started to enjoy being a mummy.
Then came Mayhem at the end of October 2014. A deliciously easy, well not easy but much easier than Chaos, home birth. Three pushes and his head arrived on the scene the same time as the midwife did. The MIL was in the bathroom projectile vomiting after catching bug. Chaos woke up during the final throng, luckily the MIL had stopped vomiting, bundled herself and Chaos into our bed and they both went back to sleep. We ended up in hospital for observation as there was the dreaded meconium in the waters again and I had lost a tonne of blood. Mayhem didn’t feed for ages but when he did I immediately knew. Yup, tongue tie number three in the family.
Incidentally there is a link, however tenuous, to the over production of folic acid and tongue tie development. I took prenatal vitamins with natural folate and it didn’t make a jot of a difference. Mayhem still had a tongue tie, my lips a mixture of our ears and beautiful eyes. I decided to take action and arranged for a local IBCLC to come and snip his tongue tie on Day 5. A swaddle, a snip and a breastfeed later and no change, no epiphany and no message from God. I should have expected it but really hoped it would make a change this time. Second snip and couple of weeks later and still no joy. He still had a restriction and a tongue tie. I had to go back to see the same infant feeding co-ordinator to get a referral to see a surgeon.
Things had improved since having Chaos and Kent was now referring to Kings College, London and Mr Patel, a tongue-tie specialist. So I had my referral and just kept on feeding. Mayhem lost 10% of his birthweight too, luckily this time we didn’t have to go in because it was just 10%. I also didn’t need to supplement. Hubbie was concerned I would turn into a blubbering wreck again, so was I. I should have just combination fed from day dot but again my stupid single-mindedness got in the way and I wanted to exclusively breastfeed him. I truly believe that breastmilk is miraculous stuff and want, beyond anything to give my boys the best start. It didn’t hurt as much with Mayhem, I applied the lansinoh and kept on applying it, gritted my teeth and went with it.
The appointment at King’s was pretty full on. My father had passed away after a long illness and we ended up having to travel down to London rom Lancashire for the procedure. Luckily they let Mayhem go first, so we could get the division done then get the train back. I say luckily because it was awful. You were advised to give the last feed at 2pm then not feed again until after the procedure. Mayhem fed so frequently he was pretty much constantly attached, he never, NEVER went more than two hours before being fed. there is no way I could have left him for that long without giving in and feeding him!
Mr Patel believed in vigorously massaging the wound, to the point of pushing as hard as you possibly could to ensure that the wound would remain open at least three times a day for a week after the procedure. He made his point very clear, we HAD to do the exercises if we wanted the tongue tie snip to work. We had to leave the room whilst they did the revision, then a quick breastfeed later and…yeah, you guessed it…no change. God loves a trier…right??!
That was when Mayhem was 10 weeks old, he’s due to turn 22 months old in a couple of days and we’re still breastfeeding. Yes, it still hurts and yes I still need to apply Lansinoh sporadically. He grips on with his teeth because he has such a shallow latch and I always a have lovely teeth marks in my areola after a feed. But I do it for him. He needs it. He wouldn’t take a bottle, I tried a few and then gave up, the boob just comforts him so much and he loves it. It has been our saving grace when he’s had to have general anaesthetic for the CT scan, biopsy and the surgery to remove the tumour. It comforts him if he needs it, he loves his ‘boo boo’ and I love him. Breastfeeding has been the hardest ever for me but this journey has taught me that as a parent you are more than willing to sacrifice anything for your children…even if it hurts like hell!!