Not too long ago, we published a blog about tongue-tie and how it may impact breastfeeding. Today, we give you the very personal, honest and emotional story of Pippa from Gateshead, and her husband Ad, both sharing their experience with their first son Toby.
Remember that each experience is unique, and we are not sharing this story to show you that IF your child has tongue-tie, it means that this is going to be your story too!
We are sharing this story because it is human, and it beautifully brings to life the human side of the impact that tongue-tie can have, especially when combined with the various bouts of mastitis that Pippa had.
We are sharing this story because if you’re going through some of the emotions and tribulations that Pippa and her husband went through, we want you to know that you’re not alone and that support IS available.
So without further ado, in the words of Pippa and Ad, here is their story!
“Toby was born on a Sunday at 4.47am. He didn’t feed immediately as he was taken from the birth centre to be checked out as he was grunting, but he returned within about 40 minutes and did feed within approximately 90 minutes from his birth. He latched on ok (the midwives checked the latch), and we were heading home by 1.15pm.
When the midwife visited us the next day I was already sore with cracked and bleeding nipples, and the midwife suggested I applied Lansinoh cream or Chamilosan, but once again I was told that Toby’s latch was ok.
After an awful night on the Wednesday with lots of tears and constant feeding (probably normal newborn behaviour), we called the midwife team on the Thursday morning. By that point I remember already feeling like a failure – when Ad’s mum and sister arrived and asked me how we were we both dissolved into tears. The breastfeeding support lady arrived soon after and made some tweaks to positioning for us – I don’t remember her checking his mouth, but if she did, nothing was said.
Day 5 came around and my nipples were shredded. The midwife came and weighed Toby – how could a baby who had fed so frequently have lost 10oz?! It was within the 10% ‘tolerated’ weight loss though, so there were no alarm bells. The midwife also recommended that I used breast shells to protect my nipples between feeds.
We battled through the weekend, but on Monday afternoon, when Toby was only 8 days old, I was starting to feel unwell. I left Toby asleep with Ad whilst I went to bed. By the time he came up to wake me, I felt rotten – my temperature was high, and when we rang the postnatal ward, they recommended that I went into hospital. I think I became aware of a lump in one of my breasts at this point and fully expected to be told that I had mastitis and to be sent home with antibiotics.
I did have mastitis, but instead of being able to go home, I was pretty gutted to be told that I would be admitted with Toby for IV antibiotics – I felt really unwell, and I couldn’t see how I was going to look after my little boy all night ‘on my own’.”
“The first days of being a first time parent were a mix of elation and sleeplessness, and there were a few tearful nights from Toby and Pip. Although I knew she was finding feeding painful, I was naively under the impression that although not plain sailing, it would sort itself out in the end.
A week and a day after Toby was born, Pip was possibly in the worst condition that I have seen her in. The trip to the hospital seemed like a whirlwind – within what felt like minutes to me, Pip was admitted and hooked up to an IV. Toby was with her, and I was heading back to an empty house. I comforted myself by thinking that the midwives would sort it, and we’d soon get back to the new ‘normal’”.
“After the first night in hospital, the infant feeding co-ordinator came to see me, and somehow I felt that the mastitis was ‘my fault’, due to the poor latch and positioning. She recommended that we started expressing milk to try and clear an ever growing blockage and also encouraged us to have Toby latching on directly (biological nursing), but she wanted this to be observed by staff on the ward. This meant that every time we felt ready to position Toby on the breast, we had to call a midwife or health care assistant, but instead of simply witness him latch they would manipulate him and my breast and ‘latch him on’ – the opposite of what she was asking us to try.
Overall, I found the experience very unhelpful, and in hindsight I feel that the advice I was given wasn’t always right. The breast pump damaged my areola and caused further issues with latching. I was tired, ill, and I didn’t know better.
Early on during our hospital stay Toby’s tongue-tie was noticed, and we were lucky that there was a tongue-tie division clinic in the hospital that afternoon, so Toby had the procedure called ‘tongue-tie division’ to resolve the tongue-tie. Unfortunately, it wasn’t the instant fix I had hoped for – Toby refused to feed from the infected breast from immediately after the surgery for 24 hours, which added to concerns about engorgement and about his weight. Because of this, I was asked to introduce milk top up’s for him via a syringe – that only felt like more evidence (in my eyes) that I was failing my son.”
“During my visits with them, she seemed to be feeling as though it was all her fault somehow, which I knew was not the case, and that made me wonder about the advice that she was being given. There was a mention of the tongue tie, which we both hoped would be the silver bullet. Seemingly not.”
“Three days after we had noticed the onset of mastitis, and my breast was still blocked. With medical staff now concerned about an abscess, I was referred to the breast clinic for an ultrasound. I had been encouraged to have skin-to-skin with Toby to try and clear the blockage and encourage him to latch ‘better’. As I was trying this with Toby, the surgeon from the breast clinic came to see me – immaculately dressed and made up, she walked through the curtains without giving me a chance to cover up. I felt humiliated and pretty broken. I also felt that the advice I was given by the breastfeeding midwife wasn’t being shared with people on the ward, and I was at rock bottom. I vaguely remember hearing a nurse talking about me and my mental health in a totally inappropriate way and sobbing when Ad arrived.
That night I was moved into a single room on another ward. I was given a better breast pump and instructed to double express after each feed. After a night spent bed-sharing with Toby he was able to eventually clear the breast. The scan the next day was clear, and we were sent home.
My confidence had been knocked, and I felt angry about those days. My nipples were still damaged, cracked and bleeding.”
“Eventually Pip and Toby came home, and I tried my hardest to support and care for my wife and new son, it seemed the only thing I could do to try and make life easier for them. The following few weeks, Pip did everything she could possibly do and took advice from a variety of professionals. She was still in pain and still feeling as though it was her fault somehow.”
Once home, I contacted La Leche League (LLL) and visited a leader in her home one evening – this did help with my confidence levels, so I decided to attend the next available LLL meeting, which was also helpful, but it did take Toby over a month to regain his birth weight. By then, I had had another bout of mastitis and had also been taking regular paracetamol and ibuprofen for pain in my nipples during and after feeding.
At our six week health visitor check we were referred to a breastfeeding clinic, where we were told that Toby still had restricted tongue movement, and we were referred back to the tongue-tie division clinic, so that he could have the procedure again. Due to Christmas / New Year it was about three weeks before Toby and I were seen again at the tongue-tie clinic. They felt there was nothing to cut. As I walked back to our car, I felt numb.
Toby was still being weighed weekly at this stage as his weight gain was still slow and he was dropping down the centiles. I went to a breastfeeding group that week and tried what they suggested, as we had ongoing issues with the latch, and my nipples were still cracked. I was treated both for thrush and an infection in the cracked nipple, but in the end it was “just” on-going issues with his latch.
I went to the January LLL meeting and was once again told that Toby’s tongue wasn’t moving laterally enough to promote good milk transfer, this time by an IBCLC qualified practitioner. Because the tongue-tie clinic at the hospital had already discharged us, the only option I was told we had at the time was to pay privately to have it divided again. This involved an over 150-mile round trip – I remember that it was snowy, I couldn’t drive any distance because seatbelts were agony on my breasts, and we decided not to go down this route.
A week or so later I sobbed through all the night feeds, and in the end Ad took Toby and gave him a bottle of formula. Thankfully it snowed that day, Ad didn’t go to work and, and I laid in bed telling myself I’d failed Toby. Ad fed Toby and looked after us both. I gradually started reducing his breastmilk feeds over a month, aware that I didn’t want mastitis again. It took about 2-3 months for the cracks in my nipples to heal.”
“I was still feeling frustrated and annoyed that I couldn’t take the pain away – I felt that the best I could do was support Pip and try to be prepared. I debated with myself for days as to whether getting formula ‘just in case’ was being unsupportive. In the end, I went to a supermarket and bought some formula, alongside a selection of brands of bottle and teats, hoping that there must be one combination Toby could cope with! I kept them until the morning came when I couldn’t let it all continue.”
“I felt slightly ‘better’ when we noticed that even with a bottle Toby struggled to get a good ‘latch’ – there was always a stream of milk out of the corner of his mouth. I wonder now if he also had a high palate and whether that could have impacted our feeding relationship as well.”
“I’m glad I bought a selection. Toby seemed to really struggle with the more ‘natural shaped’ teats.”
“Years later, I hadn’t realised how raw this all still is, as I’ve had tears down my face for most of writing it. My aim with Toby was to breastfeeding him for 12 months, and I couldn’t do it. When Toby’s younger brother Kit was born I was so scared that history would repeat itself. I asked for breastfeeding support in the early days and following an assessment we were referred to the tongue-tie division clinic. When they rang to organise the appointment I told them that it wasn’t required. Kit was gaining weight well, and I wasn’t sore. Kit does have a tongue-tie, but it doesn’t impact on feeding or tongue movement and now aged two he still loves his milk from Mummy.”
“It seems quite strange to remember back to this time. The sound of Toby’s mobile, with its muzak versions of Mozart and Handel is etched in my mind and associated with the feelings of frustration and sadness for Pip’s pain in those early days of parenting”.
As you can see, here’s a very very honest recollection from Pippa and Ad on how they felt during those first few days, weeks and months in the postnatal period, struggling to breastfeed their son. We would like to thank Pippa and Ad for sharing something so personal, and we hope that their story with Toby, coupled with the different experience they had with their second son, just shows how every journey is totally unique and different. With two babies with tongue-tie born to the same parents, Pippa and Ad had two completely different experiences.
We would love to hear your stories – if you would like to share yours with us, please get in touch!