E’s Story

My baby girl was checked immediately after the birth by a paediatrician. I don’t know whether TT was checked for, it was not mentioned.

I asked for help with breastfeeding from the midwives present. I was told that the next midwife on shift would help me (baby was born at 18.30. Shift change was 20.00/20.30).

Too late!

When the next midwife on shift came to the room, I asked for help breastfeeding and she said that the next MW I saw on the Post-natal ward would help with breastfeeding. My baby was nearly six hours old before we were admitted to the PN ward. TOO LATE!

(From my notes, I now know that the first MW informed this second MW in the labour room that BF had not been commenced. The second MW then wrote in my post-natal ward transfer documents that BF HAD been initiated. Error. So when I was admitted to the PN ward, the MW who received me was given the information that my 5.5 hour old baby had breastfeeding – when she hadn’t).

At midnight, nearly six hours after my daughter’s birth, the MW on the PN ward helped me with our first feed. We were both tired by this time and my husband had gone home.

The following morning (baby was 12 hours old), my nipples had blood blisters on them, after just two/three feeds. The MW commented this must be due to poor latch. She observed the latch and could see nothing wrong with it. This is noted in my notes, but no action was taken.

After shift change a student MW kindly helped with the latch. Baby was taken off and reattached repeatedly over 15mins. She couldn’t pinpoint what was wrong, but wasn’t satisfied that everything was right. She left me to it.

My baby’s newborn paediatric checks were done on the post-natal ward at 2/3 days by a junior doctor under observation. I do not know whether TT was checked for. It was not mentioned.

Day 2 I spoke to two MWs about the baby’s lengthy feeds (2 hours) and that baby fell asleep at the breast, but awoke quickly, unsatisfied. This is stated in my notes. Two MWs spent about 40 mins with me, showing me how to stimulate the back of the baby’s tongue to keep the baby awake during a feed (archaic, barbaric). One MW, who assured me she had decades of experience, watched over me whilst I did this during a 30 min feed. She assured me that once the baby was laid in her cot, she would fall straight asleep. When the baby remained unsettled, the MW showed her surprise, and then left the room.

That night, I fed frequently, but the baby would not settle, to such an extent that a student MW offered to take her.

Day 3 baby was weighed just before morning shift change on PN ward. She had lost 9% of birth weight.

Hurriedly, before she went off shift, the student MW gave me some syringes and a feeding chart and said that I had to feed, express and top-up every 2 hours. She pointedly told me that the baby needed topping up with 40ml at each feed if she was going to gain sufficient weight – I was openly doubtful that I would be able to produce 40ml (After each feed? On Day 3??). She repeated ‘The baby needs 40ml top up at each feed if she’s going to gain weight.’ She then showed me handwritten figures which displayed the amount of milk a baby needed to gain x amount of weight. Not helpful. I needed genuine BF advice, from somebody properly trained and experienced.

I was warned that if baby weight dropped any further that the neonatal doctor would have to be involved. The day was spent trying (unsuccessfully) to express into a syringe. I was then attached to an expressing machine, which was painful and also unsuccessful. Not surprisingly, as my milk had not come in. That night a MW expressed surprise that although my breasts appeared full, I could not express more than a couple of drops. After attempting to hand express me herself (humiliating, agony), without success, she shrugged in dismay. And left.

Day 4 baby was weighed and found to have lost 11% of birth weight. MWs went into a frenzy and called in neonatal doctor. Neonatal doctor examined baby and announced baby was healthy. I do not know whether TT was checked for. It was not mentioned.

I asked neonatal doctor whether my protracted recovery and anaemia was affecting my milk and his response was dismissive ‘There’s no iron in breastmilk.’ He assessed my feeding/ nappy chart and told me to keep feeding, expressing and topping up every 2 hours. My nipples were in shreds by this time. At one point I couldn’t face the next feed. My sister delivered an emergency tube of nipple cream to the desk and a MW passed it to me. My nipples also looked like a new lipstick at the end of a feed. But if anyone tried to help me with a feed, they watched the first few minutes, not the end of a feed).

Day 4 I spoke to the student MW who had advised me that the baby needed 40ml on top of each feed, and realised that she meant formula. But she wasn’t going to say it outright. I said I wanted to try everything with regards to BF before resorting to formula. (FF was not out of the question, but I saw it as a last resort, and only to be given under the advice of someone who knew what they were talking about).

Day 5 after a rigorous regime of 2 hourly feeds, expressing and top ups, my baby’s weight showed a slight improvement. (However, we were not discharged until day 12 due to issues with my recovery.)

During our 12 days in hospital we saw approximately 30 MWs, 12 doctors (including at least 3 consultants), and the baby was examined FOUR times by a neonatal doctor. At no point was TT mentioned, nor diagnosed. Upon discharge my notes incorrectly stated that the baby was mix fed.

Error.

My baby lost 11% of her weight. My nipples were blistered within 10 hours and remained extremely sore. Baby was distressed as we tried to commence a feed, punching my breasts in frustration until they bled. MWs were aware of baby’s protracted feeds, that she fell asleep on the breast, and that she would then wake quickly from hunger. MWs were aware that baby was unsettled. I NOW know that the hospital has a Breastfeeding Specialist MW. For some unknown reason, even though we were experiencing this catalogue of problems, we were not referred to the BF Specialist MW. And TT was never mentioned.

Although I was subject to a lot of attention, from a number of different HCPs, I did not feel supported. I felt that calling in the neonatal doctor was held over me, as a bad consequence of my failure to allow my baby’s weight to drop. I felt that they would have preferred me to give formula.

Upon our return home, I mentioned to the first visiting MW how the baby was feeding frequently and for a long time. She assured me that she was just trying to boost my supply. Each time I saw a MW or health visitor in the early weeks, they expressed grave concern about my baby’s slow weight gain. She was otherwise healthy. I repeated to everyone that the baby was falling asleep at the breast, then waking up hungry. They would automatically blame my latch, then couldn’t spot any problems when they watched it. They would then just repeat on auto ‘Feed and Express. Feed and Express.’ Or one corker ‘Feed for 40 mins on each side. Every two hours.’ (Whilst my milk had come in on day 5-6, after another week, my supply did not remain abundant. I did not respond well to expressing. I now know this was because my breasts weren’t being sufficiently stimulated by my baby’s suck). When I reported, and the scales showed, a lack of progress, they were at a loss.

I mentioned my baby’s heart-shaped tongue in passing to one MW (I thought it was cool!). She gave me a disdainful look, as though she couldn’t believe that a new mother would be vain about the appearance of her baby’s tongue. (of course, I now know, a forked tongue is a classic sign of TT). I was made to feel very stupid for making this comment, as though I was being vain about my baby’s tongue.

I had a protracted recovery, and so leaving the house was very difficult and each visit to the MW left me exhausted for the next two days (there were many visits). I became disheartened as I felt that I was not being listened to, and their responses were on autopilot. When I started to look up breastfeeding drop-ins, many of them felt far away, even if they were within my borough. I was not up for a journey with a new baby in tow.

I saw one listed near me, which advised to call before attending, to check it was on that week. When I called the children’s centre and enquired about their BF drop-in session, the receptionist knew nothing about it.

As my husband had returned to work (long hours) as soon as I returned home from hospital, I hired a postnatal doula for a few hours a week for a few weeks. I told her my breastfeeding woes, and she helped me latch and relatch the baby to the breast. She admitted her bf knowledge and experience were limited. Although she didn’t actually help solve any of our problems, the fact that she was kind, reassuring, supportive and non-judgmental was what I needed. A bit of kindness doesn’t solve everything (or indeed anything) but it goes a long way to making someone feel better.

At three weeks I noticed the baby had a white tongue and white spots on the inside of her mouth that I could not wipe away. (I had been on IV antibiotics at the hospital, and had four further courses of antibiotics upon discharge. I was not notified of the link between antibiotics and thrush. And I NOW KNOW the prevalence of thrush in babies with TT). I took her to my doctor’s surgery where I saw a nurse. She admitted she did not know what she was looking for, but when I said I ‘thought’ she may have sign of thrush, she prescribed nystatin drops. I did not realise how strong these drops are, and my baby screamed non-stop for hours each time they were administered. It took me about three days to make the connection, and it soon became a huge dilemma as to whether to give her the drops and cause her great pain, or to leave the thrush untreated. I put the ointment on my nipples before a feed as a compromise.

This seemed to work.

A friend recommended a private lactation advisor, who was prohibitively expensive. I payed for a Skype consultation with her. She was very kind and encouraging, and non-judgmental. Although she pretty much gave the same advice regarding ‘Feed and Express’ she was more reassuring about my experience, the affect of the anaemia, and seemed to listen more when I said ‘I am producing VERY little when I express. Drops only.’ So she recommended I use a high dose of fenugreek tablets, and have me other, more concrete tips. She thought the pain in my breasts was caused by vasospasm, rather than thrush, and told me to keep my breasts warm, which helped the pain and sorted this issue, thankfully.

During this Skype session, the BF advisor suggested that the next time I took the baby to my doctor’s surgery that I asked for her to be checked for TT. How I wish I had followed this advice to the letter: however, by this time, I was so used to being dismissed for every query I raised, and I felt beaten down by the same two pieces of advice repeated on a loop, that I no longer had the courage to do anything else other than sit and nod through any of these appointments.

I did look up TT symptoms, but dismissed it as my daughter did not have a membrane that reached to the tip of her tongue, and she could reach her tongue to her lips. Of course, I know now that Posterior TT is less obvious than Anterior TT).

At our six week check, I did however, tell the doctor that BF was not going well. He told me to talk to the health visitor. When I told him I had done this, on numerous occasions, he prescribed Domperidone. Although he examined the baby, as it was her six week check, there was no mention of TT, and no referral to a BF Specialist MW.

At seven weeks my baby still had not regained her birth weight. I was still under the treatment of a consultant, so I had not been discharged. When I mentioned to the consultant that she had not regained her birth weight, she agreed that formula was the best option at this point. So I started topping up with formula. No mention of TT or recommendation of a BF Specialist MW.

My baby appeared insatiable with regards the bottle. Even if we gave her a full bottle after a feed, she would cry on cue after 2 1/2- 3 hours with hunger. I fed, expressed, fed her expressed milk and then formula. It was exhausting, soul destroying. Worst of all worlds.

She took more and more formula.

7-8 Weeks: Before Christmas I spoke to the independent BF adviser, who recommended I make the most of the Christmas break, as my husband would be off work for the week. So, even though we stayed with various family members, and drove around the country, I took every opportunity to feed my baby in bed, and then express.

A few weeks after Christmas, I knew that my milk supply hung on a thread (I was still taking Domperidone, but the only major affect it was having was making me put on weight). I called my private BF advisor and told her that things were at crisis point, and if the problem (whatever it was) wasn’t sorted, it was unlikely that I would be producing any milk by the end of the week. She went over things, including TT ‘You had her checked for TT, didn’t you?’ I replied ‘If she had it, it would have been diagnosed by now; we were kept in hospital due to her weight loss, she’s been examined four times by a paediatrician, once by our GP at her six week check, she’s seen countless MWs (50?) and health visitors. But it’s so funny, she does have a beautiful Heart-Shaped Tongue!’ I almost heard a clatter on the end of the phone. She did not state that this was an absolute sign of TT, but she strongly recommended that I take her to a certified Lactation Consultant for a proper diagnosis.

Whilst I tried to find a lactation consultant near me, I took my baby straight to my GP’s surgery to see if they could diagnose TT, or refer  me to someone locally who could (for free please!). My GP said ‘I wouldn’t know TT if I saw it. But your baby looks healthy and a good weight.’ (So what’s your problem?) When I explained that this was due to the FF her response was ‘..Well, I could refer you to a paediatrician, who could diagnose it. BUT you would not be seen as an emergency, because your baby is healthy and she takes a bottle.’

I reiterated that my supply was hanging on a thread and I couldn’t wait for weeks if WE were going to preserve BF. To wait would mean abandoning BF. The GP’s response was ‘Have you thought about how you would deal with your feelings of stopping BF?’

(Once again, a theme that runs through my story is one of feeling as though I was speaking a different language to those who I had been led to expect would help me. I was asking for help with BF, what was so impossible or demanding about that? Previously, when a nurse asked routinely how baby was being fed I said ‘Mixed; breast, expressed and FF. I’m struggling with BF and I’m not happy about FF.’ her response, kindly met was ‘Don’t worry dear, I’m not here to judge you.’ … Being judged was the least of my concerns, I felt accustomed to it by that point. I wanted HELP. How many different HCPs and in how many different ways did I have to ask before I received actual, productive, constructive HELP?)

Realising that I was not going to get any help from my local (supposed) support network, I travelled from Hackney to East Croydon (1 1/2 hours each way) by train to see a certified lactation consultant who diagnosed Posterior Tongue Tie in my NEARLY FOUR MONTH OLD daughter within seconds. She was not warm and fuzzy, but she was pragmatic and offered me practical advice. She weighed baby before and after a feed – this was very reassuring to me as it confirmed that the baby was receiving more milk from me than I had imagined. She also said that the baby was receiving far too much formula (I had been giving her quantities for a FF baby. I had no information about how to mix feed a baby). She recommended nipple shields in order to increase the surface area for the baby to latch onto. They were fiddly to use, but did improve things slightly.

I decided from our appointment with the lactation consultant that I would like to have my baby’s PTT cut in order to be able to give BF a chance.

(Thank goodness we have Bupa through my husband’s job. We were able to see a specialist at King’s College Hospital within a couple of days). However, I did need a referral from a lactation consultant before the specialist would see my baby (Bupa did not pay for that).

I saw the specialist at KCH (paediatric surgeon?) within two days of having my baby’s PTT diagnosed by a LC. He confirmed PTT and after verifying that I consented, performed a frenulotomy on my four month old baby. She was put straight to the breast immediately after the procedure to soothe her and to aid healing. He also instructed me to BF frequently (2 hourly) and to massage under the tongue to encourage the wound to heal so that the tongue could move properly.

The appointment with the specialist at KCH was challenging/traumatic for a number of reasons: Firstly, the specialist questioned me at length about our BF history, our symptoms etc. He was quite cold and abrupt and appeared dissatisfied that I had not been given a patient history form to complete before our appointment, and I felt that he was disapproving of my answers (or perhaps that it was taking up his time). For instance when he asked me what help I had had for BF I began to list the many HCPs we had encountered, and he cut me off. He asked me whether I had been to any BF groups, and when I tried to explain why I hadn’t been to one due to my difficulties in gaining access, he cut me off. I felt judged and alone.

Secondly, I had arrived early to BF my baby well before the appointment, and I had managed to get her to sleep, as I was told I needed her calm for the procedure and some babies even sleep through the procedure. However, he needed to examine her before the procedure to confirm TT which woke her. So my baby screamed whilst he then explained the procedure, the pros and cons, post-procedure care which I had to adhere to etc I had to take in and process this information, and give ‘informed’ consent whilst he shouted over the sound of my baby.

(of course he needed to examine her himself before doing a procedure – but he would only do one appointment at one price: ie diagnosis and treatment – you had to decide there and then once he had diagnosed TT whether or not you wanted procedure. If he examined baby and said there was no TT you paid the same amount, whether he performed the procedure or not. In addition, once the procedure was over and baby was attached to the breast, there was no follow up with him, or even through that department. You were on your own to make arrangements for a follow up, which of course costs further money (not covered by Bupa).

Putting my baby straight to the boob soothed her, and I felt and heard a difference in her suck, so really the procedure was not too traumatic (the train ride home, with both of us covered in blood was rather traumatic, however). I kept to the post-procedure regime of feeding every 2 hours and massaging under the tongue.

That week I felt able to go to a BF group a few miles from my home. It was a friendly group, and I told the group leader about our TT experience. They were sympathetic, and explained that Homerton/Hackney do not want to address the TT issue for some reason (money?). But the set-up was quite passive. After sitting and feeding for a while, I had to be quite assertive to voice that I needed help with the baby’s latch, and the course leader sat a few metres away and said it looked fine. She corrected one aspect, but basically I sat and fed my baby for the hour, which, apart from the friendly faces, I could have done at home.

A week later I returned to the LC for her post-procedure check up. She confirmed that the area had healed well and did not require re-cutting. She did a pre and post-feed weigh, and although the baby was taking more milk than at the previous appointment, it was not a huge difference, from 70ml to 90ml. But it was an improvement. She observed a feed, and as we left she said, as though in passing ‘You need to reduce her attachment to the bottle, acclimatise her to the breast more. And increase length of times between feeds.’ No advice as to how. If I was able to do that, I would not have had to contact herin the first place.

I did not really feel able to contact either the LC or the paediatric surgeon after this. I felt as though they thought I just hadn’t tried hard enough. I contacted the BF advisor, who was a bit hesitant about getting involved again, as she didn’t want to step on the Certified LC’s feet. But I stuck to feeding and expressing continuously (plus skin-to-skin in bed), and managed to reduce the amount of formula my baby received to about 240ml per day (spread out as top-ups after each feed). Success. We experienced some good feeds, and even some feeds where I did not see the need to top up with formula.

However, after a couple of weeks, every drop was still a struggle. My supply had never recovered and my baby had worked out that the bottle yielded a fast, reliable supply of milk. She would latch well, and gulp well for the first few minutes, but then she would become frustrated and pull away from the breast, which she had not done before and was very painful. She was a bit too alert now for me to trick her into taking the breast when she knew she preferred the bottle.

I returned to my GP who referred me to the BF Specialist MW (hoorah! ). Non-emergency, of course. I got an appointment at my local hospital for A FEW WEEKS LATER. My baby was 5 months at this point. And it was six weeks since the frenulotomy. I finally got to speak to the BF Specialist MW. I told her about the TT and frenulotomy, but that I felt my baby was losing interest in the breast and still favoured the bottle, even after our previous progress. She watched me latch the baby and after a few seconds she said ‘Yes, you’re right, she’s using your breast as a dummy. She’s not really feeding from you.’ She was then very sympathetic about my long stay in hospital, the anaemia, protracted recovery etc which, emotionally, I needed. But she basically told me that the baby was done, and there was no point in me flogging a dead horse.

She agreed that the hospital had a terrible policy regarding TT (they ignore it) and that things probably would’ve been better if the TT had been diagnosed earlier. She could not explain why I had not been referred to her, even though my baby lost 11% whilst we were still in hospital.

I asked, ‘But what about next time?’ She thought she was being reassuring when she said ‘Well, next time hopefully I’m still working here and you can demand to see me ASAP. And you know to ask that your baby is checked for TT immediately. And hopefully you’ll have a better recovery next time.’ but I didn’t feel reassured by this – that it depended on HER, the only person in the borough who cares about TT? What if she’s not still working at Homerton? And what if we encounter a different problem, other than TT? A problem I’ve never heard of, or know the signs of? How do I navigate this maze of HCPs who only have one piece of advice with regards to BF ‘Feed and express. Feed and express.’

We had a last feed that evening, and that was the end of our breastfeeding. My breasts never leaked, nor felt over full. But I felt very sad. We had limped on until 5 1/2 months, and although we had experienced some good feeds (I loved lying side to side with her) it was always a struggle. I felt absolutely that I’d failed, and I was never able to feel confident or relaxed about any one feed that we had together. I feel very bitter that I did not receive the help I needed when I needed it, and when I released what I did need and sought it out, I was rebuffed. I felt judged and criticised at almost every point. I think the very judgemental BF class that I attended during pregnancy was where these feelings originated. The leader stated that every woman can breast feed (not true – and I’m not referring to TT issues here), and it’s only if you don’t try hard enough that you are not successful, or (this was most damaging in my case) feel pain at a feed. I was never under the illusion that BF would be easy, but instead of putting all this energy into telling women that they must BF, why not HELP them with showing them HOW to BF, and by supporting them and helping them to sort the many issues that arise once they embark on it?