Tongue tie experience

Author Philippa Murphy

23 July 2013
Tongue tie experience

I had never imagined doing anything but breastfeeding my first child. I went to the antenatal classes and was impressed by the amount of breastfeeding support available.  Both my pregnancy and birth were more difficult than I had expected, but when my daughter was pulled out in an emergency C-section mouthing everything in reach, I thought at least breastfeeding would be easy. She latched on as soon as we got to the recovery room and sucked for an hour. It hurt, which the antenatal classes said it shouldn't, but the midwives told me it takes a while to get used to.

A midwife checked for tongue-tie on the second day in hospital, when I complained of continued pain, and said there was none. Two breastfeeding helpers came by and helped me with the latch. I was sent home, and I thought things would get better.  Instead, they got worse. My nipples developed bruises and cracks. By the fourth day, my daughter had lost more than 10% of her birth weight. We were told to supplement with expressed milk, and she gained back more than a third of the lost weight in three days. Again, I thought we had weathered the problems.

But a few days later, I was feverish with mastitis in both breasts. My nipple condition continued to deteriorate. I was now weeping through feeds, only able to handle the pain with the relaxation techniques I had practised for labour. My daughter gained no weight at all in her second week. The health visitor told us to keep supplementing, but I had stopped being able to express. We syringed the few millilitres I managed to obtain into her mouth. A breastfeeding support worker came by nearly every day. I felt a bother and incompetent – all this help, and I still couldn't breastfeed properly! I was told I just had to have more confidence. Being stressed was lowering my supply.

Wracked with guilt that my own concern was starving my baby, I tried to be more positive. I fed my daughter almost constantly. She started slowly gaining weight. By four weeks old, she was only a few ounces below her birth weight, and the health visitor said we had had a slow start, but it was fine now.  Yet I was still in pain. And things just didn't seem right.

I read about activities to do with your baby – baths, tummy time, baby massage – yet they all said to do it "when your baby is awake but not hungry" and "no sooner than half an hour after a feed". Such a time didn't exist. If she was awake, she was hungry. If she was awake more than half an hour after a feed, she was screaming in hunger.

Friends had told me about all the things they did while nursing their babies: reading books, writing emails, taking walks! But my daughter required full attention and both hands. She fell asleep at the breast, and only constant tickling and breast compressions could keep her eating. If I turned my attention from her for 10-15 seconds, she'd stop sucking, fall off, then wake upset and hungry. I guiltily ignored her for long enough to shovel down my own meals, knowing she was at my breast but not eating.

I could never figure out when she was done. I was told to always offer the other breast; she'll refuse when she's full – but she never refused. Bedtime would be when she was obviously too exhausted to eat anymore. I'd settle my hungry baby so she could sleep for an hour or two, giving her enough energy to eat again. Was this really how it was supposed to be?
But she was my first child. Other people must be better at motherhood than me. If I just relaxed, everything would be fine.

Then I happened to read a blog about a baby with lip-tie. The photos of the baby looked just like my daughter! I followed links. Lip-tie was connected to something called "posterior tongue-tie", and one image in a presentation of Dr. Palmer's struck a chord: it was a boy with tongue-tie, whose upper jaw was too small for all his teeth.

Memories resurfaced, of my own smile, just like his. Of a horrible teenage year wearing a palate spreader, which my mother cranked every night to skull-splitting pain and both of our tears. I went to the mirror. I had lip-tie too. The ties could be genetic – if we both had lip-tie, did we both have tongue-tie?  I took my daughter to the hospital's breastfeeding clinic, where I was seen by the head of the whole unit. I told her about the lip-tie and my own history, and asked her to check for tongue-tie again. She looked into my daughter's mouth. I tried to tell her about what I'd read on Dr. Kotlow's site about feeling for posterior tongue-tie. She talked over me and said my daughter was fine. Her lip looked normal, her tongue was not tied, and she was gaining weight. My nipples had finally started to heal after a second course of antibiotics. Things would get better. Don't worry.  I wanted to believe her. I went home believing her, and managed to keep it up for a whole day. It was so much easier to think that everything was fine, that my daughter didn't need surgery, that if only I stopped worrying, I could move forward into a successful breastfeeding relationship. I had spent a week reading medical literature, and I was ready for a break.

But in the back of my mind was the fear: what if, fourteen years down the line, my daughter needed a palate spreader and I could have prevented it by a simple operation now? Was I trading my own current relaxation for a year of teenage pain?

I kept reading.  I talked to health visitors, paediatricians, and more breastfeeding support workers. No one had heard of posterior tongue-tie. My GP didn't know what it was either, but she was willing to take a look and refer me if needed. I got the next possible appointment with her, in two weeks, and she said a referral would take weeks after that. I agonised. What if she referred us, and months on, I met yet another professional who had never heard of posterior tongue-tie? The injuries in my nipples were reopening. My days were spent doing almost nothing but feeding. My daughter was constantly agitated, hungry all the time.

I couldn't wait. I phoned the nearest IBCLC to us I could find, on the far side of the country. She knew what posterior tongue-tie was! I wept in relief. She knew of no one near either of us that could treat it, but one of her clients had visited a private clinic elsewhere. I was scared: How could I tell if this was a reputable place? What if they just saw tongue-ties in everything and I put my baby through unnecessary surgery? I talked to the client who had seen them and researched the person who would be doing the surgery. I was finally reassured I could trust them and made an appointment. On their advice, we had cranial-sacral therapy with a paediatric osteopath the day before our appointment and arranged for it again afterwards. We made the 250 mile drive, stopping every 30 minutes to feed my daughter, and went to the clinic the next morning.

My daughter was diagnosed with submucosal posterior tongue-tie, particularly tight and thick. They clipped it, and she fed right after – the first good feed of her life! The difference between before and after revision was like night and day. I realised I had never seen my baby satisfied. The drive home was so much smoother, as she happily waited 1-2 hours between feeds. That evening I had my first sit-down meal with adults in the two months since her birth.

It took a few weeks for her to fully learn to use her new tongue, and things got even better. Now, at four months old, my daughter nurses for only 10-20 minutes at a time. She climbed straight up the growth charts and is still rising!

I felt the conscientious medical attention I received throughout pregnancy and birth fell away as soon as it came to breastfeeding. The breastfeeding support I had been so impressed with is good only if you don't have real problems. Being surrounded by so much "help" put a great burden of guilt on me when breastfeeding still didn't work. The medical community needs to take breastfeeding more seriously and recognise that there are instances when problems go beyond maternal skill and confidence. Breastfeeding support workers need to be trained to differentiate between when a mother simply needs encouragement and when a mother and/or baby has a medical issue that needs addressing.

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