When tongue and lip tie are not picked up

Breastfeeding New Zealand would like to thank this mother for sharing her story with us. She hopes that it will remind all parents and all health professionals to check for tongue and lip tie. This would involve referring mothers to the appropriate help as well. We acknowledge the valuable work of La Leche League volunteers particularly for breastfeeding mothers who are facing enormous challenges. We also acknowledge the work of other health professionals but there is no denying that many things have failed this mum. We merely offer this story up as a mums experience of things going wrong for her on multiple levels in case we can prevent this from happening too many times by understanding how difficult it can be to deal with tongue tie.

“My son had a grade 4 posterior tongue tie and upper lip tie. I knew from day one. Breastfeeding hurt from the get go – the hospital midwives told me he was latching fine and my nipples would harden up, even though I mentioned I had difficulties feeding my first (also tongue tied). We were discharged.  By day 2 I was bleeding and blistered and I cried to my midwife who told me he “might” have a tie and I should go visit Westgate Medical who will snip it for me. On day 3 we were able to get an appointment, the doc hardly said a word to us….said NOTHING about the posterior tie or lip tie, snipped with scissors, told me that our feeding would be better by the end of the week and sent us home with no follow up instructions. Nothing improved.

He started having long colicky periods in the afternoon that would stretch well into the evening and sometimes night. More or less every day the day would start well but dissolve around 1 pm and he would scream pretty much until he exhausted himself and fell asleep. At it’s worst, the colic lasted 12 hours in a day. Sleep was non-existent. It was killing me. My toddler wasn’t getting any attention as this baby just screamed all the time. Breastfeeding hurt and he didn’t seem to be able to latch on a bottle.

My midwife said it must positioning. On day 9 I visited a LLL meet up and spoke with two leaders who watched a feed and told me it was positioning. I continued in pain trying different holds. I was in so much turmoil. Every feed was agony, and I didn’t know what I was doing wrong. I had no idea at this stage that there was a possibility that the snip hadn’t done what it was supposed to do. I wondered if we might have reflux. I sought an osteopath and he had three sessions with not much improvement.

When he was 3 weeks old I saw a fantastic LC Barbara Fletcher who finally said she thought he had a posterior tongue tie. I was at the end of my tether by this point.

She sent me to Alpers Dental in Newmarket. The revision itself seemed very painful, he screamed so awfully. It was a horrible experience. My partner later said the dentist seemed unsure whether he had got it all, or whether there was any left. He said it took a long time and the dentist seemed hesitant. They gave me a sheet with the stretching instructions and told me they would call me in the new year, as they were closing at the end of that week for Christmas (this was 19th Dec). During the period that they were closed, the lip wound got infected which is something a few people had told me it wouldn’t. It was a rough time for us. His lip became swollen and weepy and angry red. He became averted to latching. I kept him on constant pamol for 5 days and bathed his lip in breastmilk every chance I got. Luckily we got away with it without antibiotics, but it was a close call! The wounds healed and his suck got stronger. His feeds dropped from nearly an hour per side to 15 minutes per side. Unfortunately though the clicking just got stronger and more violent, he was still swallowing wind, and the colic continued.
I continued my work with Barbara Fletcher but we weren’t seeing much improvement. Followup with Alpers is not helpful; they get defensive about their work and are quite unprofessional in their response.

By this stage my research on posterior tongue ties is becoming somewhat obsessive; I am on multiple tongue tie groups in facebook and am constantly googling for new articles to read and other’s experiences. Tongue ties seems to be all I ever talk about. I learn so much about tongue function and the issues that arise when it doesn’t work properly.

We also saw Nikki Mills at Starship, who has had a wait and see approach.  She gives us the option of a Z Plasty procedure which requires us putting him under a GA. This seems extreme to me. I decide to pursue other options and have another appointment in two month’s time.

By this stage I am pretty sure I have PND. The effects of months of a colic baby, juggling this high maintenance baby and my toddler, and my own predisposition to depression is all contributing. I have some pretty scary thoughts at my worst. I hang in there. I know now what this is and I am determined not to let it get the better of me.
We next saw Yvonne LeFort when he was around 15 weeks old. She was AMAZING. She was the first person to finally put her fingers under his tongue and say with certainty, yes, there is still a significant tie there. I remember her telling me he had about 2 cm of functioning tongue, with around 1.5 cm of tie left – and this was post revision. She confirms to me that something needs doing (which I have been in denial about).  She tells me to contact Laser Life.

Laser Life unfortunately charges $880 for their revisions and seeing as we have now already spent over $600 our funds are running low (I am on maternity leave and my paid leave was about to expire). I contact them anyway to see what they think. They tell us to come in for an assessment. Hisham (the doctor there) hears my frustration and desperation. He sees the tie and says he can definitely help. He generously offers his services to us for free, which is amazing and humbling. I was so thankful that he gave my boy this opportunity to feed without causing us both pain.

We had our third revision when he was 16 weeks old and this time I was armed with the correct information and contacts we needed to make the third one a success. I follow up with Yvonne who shows me tongue exercises and tells me to do these 6-10 times a day, to prevent reattachment, and to encourage him to suck.
These exercises at first were extremely tedious but are now part of our routine and I do them before each feed to help him gain maximum length from his tongue. I have also just started with a cranial osteopath at Stillpoint Osteos and amazingly, 3 days after his first treatment, he finally took a bottle with minimal suction loss and a dummy on the same day. Coincidence? I think not. We still get clicking but the colic is finally abating. At the time this was written, my son was 20 weeks old.

We are now 5 weeks post revision and I am hoping that we can avoid the next surgery by continuing with cranial osteopathy and suck training.
So, to recap. My midwife, the hospital midwives, 2 Le Leche League leaders and the doctor who did the initial snip all FAILED to see our posterior tongue tie. The system failed us initially. We have classic posterior tongue tie symptoms – the only reason that this can be missed by so many people is serious lack of training. If I hadn’t kept pushing for answers I don’t even know where I’d be now.

Since embarking on this journey I have met so many mums with babies who have these ties. I feel like it’s a constant battle for mums to get correct, reliable information about them. Our breastfeeding community NEEDS to train up competently in how to diagnose these ties. I needed to know what I know now when my son was 2 days old. The lack of knowledge in our professional base is what is dangerous – I hate to think how many mothers have given up breastfeeding, or had failure to thrive babies, and needed this properly assessed. I am going to forward this to a few people in the hopes of raising awareness. Feel free to share it if you feel it may help someone.”

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