A was born at 38 weeks, via a 4 hour active labour with normal birth position. Pregnancy had been stressful from start to finish: from several early bleeds to SPD and Bells Palsy, through to lack of movements from my baby on and off for the 3 weeks prior to delivery. It is fair to say that I was not in the best frame of mind in the last trimester: Bells Palsy made me feel ugly and panicky and I was told to stay at home (during the peak of the swine flu panic) to avoid infection because of the steroids I was taking. Labour took me by surprise, and the whole thing felt very unreal as I felt like I was living in isolation (apart from my husband) from 34 weeks onwards. Just before this, I had gone to the NHS antenatal day (no space on the weekly lessons so I was given a 6 hour intensive day on the hottest day in June). The day started with two friendly midwives saying that they would not be discussing breastfeeding or post-natal care, only the birth. And that was all the breastfeeding information I had. Yes I was naive: I thought that it would just happen naturally and so I did not go looking for information. I had picked up here and there that it was likely to hurt, but it would only need doing every 3 or 4 hours and if it didn’t work, there are always bottles to fall back on. So I duly bought the bottle paraphernalia and a few cartons of formula “just in case”.
A was born at 11.07pm. I had a third degree tear, for which I was sent to surgery – my memory is hazy but I think I went away at 12.30 and came back to recovery at 2am or so. I wasn’t offered skin to skin immediately after birth (I didn’t know about it) nor was I encouraged to try to latch him on before going to surgery. In recovery the midwife said I should latch him on but he was in a deep sleep by then and wasn’t interested. I naively assumed I should wait until he woke. No-one corrected me, and it was several hours before I tried again. I couldn’t have tried earlier: I had had a spinal block for the stitches, and they left A, and the call button, out of my reach on the post-natal ward. My husband had been sent out because it was 4am by then and no-one came to check on me for a long time. A was sleeping peacefully so I assumed this was ok.
I tried to latch him after breakfast, he was sleepy but had a go. It was very uncomfortable – the usual story of a midwife grabbing and squeezing my breasts and pushing him on with the other hand. So invasive and yet no explanation of what I ought to be doing or suggestions of how to get things started.
Later that day the midwife asked if he was feeding ok. I said I wasn’t sure, she sent the care assistant to watch him latch. Which she did, declared that feeding was established and we went home.
We got home at 4pm. He fed perhaps once that night, then slept and slept. I rang the community midwife to ask if it was normal for him to sleep 8 hours straight. She said I had to wake him and force him to feed. There began the guilt – not 24 hours in and already I had unknowingly done everything wrong. Latching was excruciating, I sobbed throughout each attempt and begged my husband to prepare bottles, but then couldn’t bring myself to use them. I was determined not to fail at this but A was just not awake enough to ask for a feed. We set alarms and woke him every 3 hours to try to latch him on, my husband tickling A’s feet and hands throughout to try to keep him awake.
So it continued: jaundice set in, the sleepiness continued and by day 10 he was still jaundiced and had lost 12% of his birth weight. I hadn’t felt my milk come in, and had never felt a let-down. As a first time Mum I didn’t realise this – it is only with hindsight that I can say this now.
We were faced with admission to hospital for failure to thrive, but by force of will and feeding him every 90 minutes for 45 minutes at a time, day and night, he stopped losing weight and began to gain a tiny amount. On week 3 I arrived at the breastfeeding drop-in and they straightaway saw that my nipples were mashed out of shape, cracked and A’s tongue was not right. They helped me to improve things in the interim whilst I waited for a referral to hospital. The practice nurse had never heard of tongue tie, but promised to get me a referral to a paediatrician. The appointment was 3 weeks later (3 more weeks of 45 minutes of pain every 90 minutes and weighing with the midwife every 48 hours). The midwife and health visitor told me he had no tongue tie.
In week 3 or 4 A and I went to A&E because he seemed to be in a lot of pain, gasping, choking and being sick. He’d had hiccups a lot in the womb: reflux and silent reflux were diagnosed: on top of the 45 minutes in every 90 minutes feeds, he was then throwing up a significant portion fo what he managed to get, and then screaming in between times as he was in pain from the acid rising. Suckling soothed him but my nipples were so sore I couldn’t bear to let him stay on all the time.
At 6 weeks the paediatric registrar said he saw no significant problem: if A was feeding, what was the problem? And had I not thought of using bottles?
I got home, in tears, and phoned an independent lactation consultant. She came that afternoon and cut his tongue tie. Just as importantly, she provided me with enormous moral support: yes I could expect to breastfeed normally and she would support me to do so. Within 48 hours of the cut feeding had improved – I felt a let-down for the first time. but the reflux was out of control and he was possetting up to 15 times an hour. So we got the strongest medications we could for him and hoped for the best.
The tongue tie division helped with latching on and my nipples slowly recovered. At 14 weeks it was re-snipped: his weight gain had dropped below the 0.4th centile so I went back to the drop in clinic, where they saw that the tie had reformed. I paid again to have it cut, and this time we did different exercises to prevent the scar tissue forming.
Until 9 months I was still feeding him almost endlessly. Going out was a major operation: I couldn’t drive for more than 20 minutes unless he fell asleep, then he would wake screaming from acid pain. I was the Mum with the baby permanently on the breast in public. Nights were hideous. Co-sleeping didn’t really work – I couldn’t latch him on lying down and whilst he was soothed by my presence, he couldn’t lie flat because of the reflux so I spent my night standing up with him or constantly lifting him in and out of his cot with the mattress at 45 degrees. And changing the bedding on it up to 3 times a night when it was soaked through with vomit.
All through this time people (including health care professionals) asked me why I didn’t just give up and use bottles so that I could have a break. But they could not answer me when I told them that I was certain that breastfeeding was the ONLY thing that soothed my unhappy baby, and that the milk itsef was surely the best thing for him? We did give the odd bottle of formula but the vomit after that was greater in quantity and so revolting to deal with.
I’ve become a tongue tie bore: I mention it at any appointment he has, hoping to spread awareness. I’m intrigued to find a possible link between tongue tie and reflux. Also very angry that it was down to volunteers and my ability to pay for a lactation consultant that it was diagnosed and cut.
And now? He will be 2 next month, he has one breastfeed per day now (to get him to sleep: there is still no way other than a car ride to do that!). I nightweaned him at 16 months to save my sanity, and our nursing relationship, as I was getting irrationally angry and antsy during night feeds. The reflux went at 9 months once he got properly onto solids (we did baby led weaning because my instinct was that spoon feeding would mean more vomit). It re-emerged every time a tooth was cutting (a theory the GPs dismiss of course!). His tongue is still short: he was unable to stick it out of his mouth until after he fell over at 14 months old and bust his nose – perhaps the tie had reformed and he bit through it then. Who knows. But now he sticks his tongue out a lot, and his speaking is coming on a treat with no obvious impediment.
I’m pleased with how he eats: I was an extremely faddy eater (and still am) because I simply cannot manoeuvre and swallow most textures of food. Like a lightbulb coming on in my head, I think I have a tongue tie. Also my Dad – who had acid indigestion all his life and developed a severe breathing condition which ended his life prematurely (maybe grasping at straws but 60 years of acid indigestion cannot be good for your lungs). I don’t know for sure if there is a link between any of these things but I would love to know that someone is looking into reflux and tongue tie properly.
My experience of those first 9 months with A left me depressed, and I’m not sure I am completely over that yet. I cannot contemplate another child: everyone laughs at me and says “oh you’ll change your mind” but they just do not understand how those first months destroyed all my self-confidence and simultaneously brought my husband and I closer yet tested our relationship every day. A was a high-needs/spirited baby (as per Dr Sears and Mary Sheedy Kurcinka descriptions) and the very idea of trying to get some couple time was laughable. A needed me, we were committed to not doing any sleep training (morally and because of reflux) and whilst all my other friends were using babysitters, confident that their babies would stay asleep, or taking their babies out with them to let them sleep in the pram while they ate, we were stuck. A would only sleep on the breast, in silence. What angers me most is the lack of research: if there is a link between tongue tie and reflux then could our 9 months of screaming baby have been prevented if only properly trained staff could check for tongue tie at birth?
It saddens me to think that A probably will not have a brother or sister, and all his cousins are far away. But (selfishly) I cannot face another newborn period like we had with him. The worry, the accusations (A&E doctor: are you feeding him at all? He has lost far too much weight.”), the bitter jealousy that everyone else (it seemed to me) was able to leave the house and go to baby groups without having a baby that screamed or was on the breast all the way through. The hours spent crying (me) in the car whilst he napped in the back, feeling like I was entirely alone and doing everything wrong.
Now at 23 months, I LOVE breastfeeding him. I am sad that it will end: I know I could go for self-weaning but I think we’re ready to finish soon. He is no longer so “high-needs” although I do wonder if those first months of pain and me not really knowing how to help him have had any lasting effect on his temperament.
I am angry that many GPs and paedeatricians think that tongue tie is “debatable” and that the NHS shouldn’t routinely perform frenulotomy. I am angry on behalf of all the mothers who don’t have the good fortune to meet a volunteer who knows abnout tongue tie, and so stop breastfeeding, thinking that they have failed their baby. The NHS failed me and my son; of that I am certain.