Katie's story - Breastfeeding with hypoplasia/IGT

Hypoplasia or IGT is not often spoken about, but there are estimates that up to 1 in 10 of us have insufficient breast tissue to exclusively breastfeed. Katie found out that she was one of those people when she sought help after her son, Ezra, lost 11% of his birth rate in a matter of days. The advice she received from midwives and health visitors was conflicting and confusing, leading to Katie mixed feeding, taking Domperidone and trying triple feeding for a few weeks. It was only when Katie was able to come to terms with bottle feeding Ezra, and see breastfeeding not as a source of nutrition, but as a bonding experience, that they were able to settle into a more comfortable relationship. Ezra is now two years old and still happily nursing.

Resources - 

Making More Milk: The Breastfeeding Guide to Increasing Your Milk Production, 2nd Edition (lllgbbooks.co.uk) 

Essay on IGT by ABM breastfeeding counsellor Philippa Lomas - https://www.aims.org.uk/journal/item/igt#:~:text=Breastfeeding%20with%20Insufficient%20Glandular%20Tissue.%20ISSN%202516-5852%20(Online)%20To%20read

Finding Sufficiency: Breastfeeding with insufficient glandular tissue (lllgbbooks.co.uk)

My new book, ‘Supporting the Transition from Breastfeeding: a Guide to Weaning for Professionals, Supporters and Parents’, is out now.

You can get 10% off the book at the Jessica Kingsley press website, that's uk.jkp.com using the code MMPE10 at checkout.

Follow me on Twitter @MakesMilk and on Instagram  @emmapickettibclc or find out more on my website www.emmapickettbreastfeedingsupport.com

This podcast is presented by Emma Pickett IBCLC, and produced by Emily Crosby Media.

Transcript

This transcript is AI generated.

[00:00:00] I'm Emma Pickett and I'm a Lactation Consultant from London. When I first started calling myself Makes Milk, that was my superpower at the time because I was breastfeeding my own two children and now I'm helping families on their journey. I want your feeding journey to work for you from the very beginning to the very end and I'm big on making sure parents get support at the end too.

Join me for conversations on how breastfeeding Breastfeeding is amazing and also sometimes really, really hard. We'll look honestly and openly at that process of making milk. And of course, breastfeeding and chest feeding are a lot more than just making milk. Thank you very much for joining me for today's episode.

I am looking at the lovely Katie who is here today to tell her story of breastfeeding with IGT. Or what we might call mammary hyperplasia. [00:01:00] Now, some of you might have looked at the title of this episode and thought, what the bejesus is IGT or hyperplasia. So with Katie's permission, I'm going to have a little go at a definition first, and I want you to join in Katie.

And if I'm saying anything that doesn't feel right, especially at the end, if you want to sort of correct me on anything I've said, I want you to feel free to do so. So, in terms of language, IGT technically stands for Insufficient Glandular Tissue. And that word insufficient is a pretty rubbish word to be labelling mothers with.

It's not a great word. In the same way we used to use faltering growth to talk about children with weight gain problems, I think we need to acknowledge that calling a mother insufficient is not a great word. Hyperplasia is another word that's used to essentially mean the same thing, which means that.

the glandular tissue in the breast isn't quite there at the level we would need to be able to exclusively breastfeed a baby. And the population who have IGT are a big diverse group of people. So we have [00:02:00] women and breast people with congenital issues like Poland syndrome, where perhaps one breast doesn't develop at all.

We might have acquired conditions. So maybe someone had a surgery when they, when they were very little before puberty, they might've had trauma to the breast or radiation to the breast when they were very young. They might have had hormonal factors or hormonal disruption, so something meant that the breasts didn't necessarily go on the journey that we would have otherwise have expected.

And you might hear some myths online about what a breast looks like when there is IGT. There's actually again a big range of that as well. So some people might just have a very, very, very small breast with perhaps just a nipple that's prominent and no particular mound of breast tissue. Some people might have quite a lot of breast tissue, but it may be quite tubular in shape.

Maybe the areola is bulging. Sometimes the areola almost looks like a separate structure from the breast. Um, there may be very significant asymmetry between the breasts. We might have a [00:03:00] flat space between the breasts. One marker often given is a space of more than about four centimeters between breasts.

But, it's very difficult to diagnose by looking at a breast because some breasts that are super small can have oversupply, I'm thinking particularly one mum living in North London who I supported who never wore a bra in her life, um, and also some people who are asymmetrical have lots and lots of milk, so we've got to be really careful about what, what we say breasts look like in, in terms of IGT.

Somebody who's got this condition probably won't notice much breast change during pregnancy. And they probably won't notice much breast change in the immediate days after birth. So that's my summary. Katie, how does that feel? I know that's weird to hear me say that, but I'm mindful that not everyone who's super busy will listen to more than the first five minutes of this podcast.

So I wanted to bash that out, uh, before we go any further, but how did, how does it feel for me to say that? Particularly my comment about that word insufficient. How did that feel? 

Katie: Um, yeah, I've never really [00:04:00] thought about it, um, as a problematic word. I think, um, maybe that's coming from. The fact that I also felt insufficient, I guess, when I kind of realized that I potentially had, um, this condition.

Yeah, I think that's quite a good definition of it. And, um, it's quite hard to find a comprehensive definition. As somebody who has, since having a baby, has kind of tried to do my own research into it. it's quite difficult to find a lot of information about, about it. So I think that was a very comprehensive definition.

Emma Pickett: Okay. Thank you. Yeah. Interesting what you're saying about that word insufficient. Um, I would love to explore that with you later and I'm sorry to hear that's, that's how you felt, but that obviously makes logical sense when you're struggling to, to produce milk for your baby. Um, I'm not going to ask you to tell me what your breasts look like because that's not my business and, and that's not something I want you to feel you have to describe.

Um, one of the things I would say is this, I think [00:05:00] sometimes people have this impression that if I go and see a lactation consultant while I'm pregnant, they'll tell me if I've got hyperplasia. They'll be able to tell me. And if only I'd found someone when I was pregnant and they could have told me. And actually, honestly, I don't know if that's always true.

I, I've even worked with people with the classic tubular shaped breast who normally would have been considered a likely candidate for IGT and they were absolutely fine. So I think we just, I think we do have to be quite careful to say that anybody's going to necessarily have an issue. But there are some markers that most lactation consultants can say, let me ask you about what's happening in pregnancy.

You know, we can, if looking at your breast shape, looking at the gap between your breasts, looking at, you know, what's happening with your areola, there are some orange flags here. So because of those orange flags, when your baby's born, we're going to need to make sure you're, you are under a certain amount of care.

We're going to need to make sure you're really knowledgeable about nappies and, and What early weight gain needs to be [00:06:00] like and how we can tell a baby's swallowing and that you're really getting the support you need for positioning attachment and maximizing your milk supply. And in some cases there may also be things that are done antenatally, so there are some drugs like metformin that are sometimes given antenatally when there is a possibility of IGT.

So there are conversations that can happen in pregnancy. But I don't want you to think that necessarily, lactation consultants will be 100 percent predicting what's going to be happening when your baby's born. And one of the things I'd also say is that there are some line drawings out there that say, this is what IGT looks like.

Here are the four different types. You know, this quadrant, then this quadrant. And, I, Honestly, I look at these line drawings and I think, what? I bet you found the same line drawings doing your research. Yeah, yeah, 

I know the ones you mean. It's 

like, 

uh, I don't, 

that doesn't look like, uh? Um, and then there's another book I was reading, um, when I was doing my, um, exam called Making More Milk, which is such a good book for somebody who's got this condition.

And we'll talk a bit more at the end about resources. That book has got some [00:07:00] proper decent helpful pictures that if you come across a little sort of quadrant of four pictures and it looks Unhelpful, you're probably looking at the same ones that I was looking at when I was training So did any has anyone ever said to you?

This is the label for what we think you have or is that just something that came to you with your own research?

Katie: No, I actually saw a lactation consultant Um, when, um, Ezra, my baby, not a baby anymore, was, um, maybe a week, just over a week. Okay. Um, because I was just really struggling to get any help or support just through the normal NHS channel.

So I got in touch with a lactation consultant who came to my house. And she then said, based on, um, some of those markers, that could be the problem. 

Emma Pickett: Okay. So, we're slightly jumping ahead here because I haven't asked you about [00:08:00] your birth or antenatally, but in that moment, having that conversation, how did it feel for her to say that?

Do you remember the words she used? Did she, did she actually say, sit you down and say, I'm so sorry, but, or how did you feel about that conversation and how did it go for you? 

Katie: Um, I think it was such a confusing time that, you know, the whole, um, I got in touch with the lactation consultant because, um, Ezra had lost a lot of weight at a five day check and was on a feeding plan.

So that whole time period was, um, really kind of confusing and quite stressful as I'm sure many people be able to relate to. So I think at that moment, I hadn't really processed what, what she said. Um, I think she delivered the information in quite a, you know, matter of fact way, you know, in a very [00:09:00] kind way, but didn't really.

And she just delivered the news and then left me very much to do my own research. I think it was left as, this is what I think the problem is. Um, you'll probably never be able to make, um, enough milk for him. Um, so there's not much really that can be done. That was the, from what I can remember, the overriding kind of message.

And then gave me a couple of, uh, resources to have a look at. Um, and then we also had to look at kind of latch and positioning. Um, and then she also, recommended, um, Dom Peridone and, and suggested how I could get that. And then she also recommended triple feeding and, um, renting a hospital grade breast pump.

[00:10:00] So that was the kind of strategy. And then she left. 

Emma Pickett: Okay. So she's ticking lots of the boxes for what we would expect Peridone and, and triple feeding, but let's, let's go back a little bit now. Before we, before we talk a bit more about what you, what you went through in those early days, um, before you had Ezra, what were your thoughts about breastfeeding or your, your feelings about breastfeeding?

Katie: Um, I was fairly relaxed about it. In my mind, I wanted a breastfeed, but I thought that, um, if, if for some reason I couldn't, then it, that would be okay. I would just, I would formula feed, you know, my mum who didn't, Breastfeed me but could breastfed my younger sister, you know, it was the kind of voice of caution and saying, you know Sometimes it doesn't work out for whatever reason and I kind of brushed her off and yes.

Yes, mama. [00:11:00] No, no You know, I don't I'm not I don't have any Expectations. Yeah, okay And then tell me a bit about your birth. So, um, birth wasn't quite a plan. Um, ended up having, um, an instrumental, is that what it's called? Instrumental delivery? Yeah, it can be, forceps or ovonties, yeah. Forceps, um, episiotomy, uh, lost quite a lot of blood as well, but Made a fairly quick 

recovery.

Emma Pickett: Did you need any blood transfusion or any extra iron or anything? 

Katie: I needed extra iron, but not a blood transfusion. I think they decided against that and I can't remember why. 

Emma Pickett: So blood loss on top of any other issues, you know, primary issues is a tough combination to, to get started and especially recovering from an instrumental delivery, which sometimes leaves the baby with a little bit of a headache or nerve [00:12:00] bruising can also mean a challenging start to breastfeeding.

Did you feel in the hospital you were getting support early on? Do you remember that first feed or those first 24 hours? 

Katie: I do remember, um, the first feed and, um, I'd just come out of theatre and I'd already had to pass Ezra to my husband, not long after he was born, they kind of handed him to me, but I, I don't know whether it was the blood loss or, um, the injection that they give to get the placenta out, um, but I'd just was really unwell and I was just being sick, um, and the room was spilling so I couldn't hold him.

And then we left the theatre and I had him back at this point and I remember the midwife coming up and maybe saying something like, did you want to breastfeed? And I said, yes, and she kind of got my boob and squeezed it and well, for the reason I [00:13:00] assumed was to see if there was colostrum there and then kind of in a really no nonsense way, kind of latched him onto my breast and I thought, oh, that's that then and that was it.

That was pretty much it. There was a few times where she would maybe tweak, um, the latch or, um, help me latch him maybe a couple of times, but, um, and I think then, is it the book or the, the folder that you have, I remember her checking the, her scene breastfeeding. And I remember thinking, even at the time, was that, was that it?

Has anybody checked this properly? But you just assume that, um, that's what happens. 

Emma Pickett: Yeah. Yeah. So that sounds like a midwife, midwife under pressure, doesn't it? Yeah. Who didn't necessarily, certainly hadn't been present during the breast call, crawl part of the, uh, the training and the self attachment part of the training.

Okay. Sorry to hear that. You went [00:14:00] home. You have a beautiful baby boy. You're feeling better now physically yourself, feeling a bit, bit stronger and a bit more together. Yes. But you mentioned that he had an early, early weight loss that was a bit more than people would expect. Do you remember what that percentage was?

Yes, it was 11 percent. Okay, okay. And then those early feeds at home, you were feeling comfortable? Nipples felt okay? 

Katie: Generally okay, but I do remember, yeah, it felt quite comfortable, but he wasn't really, um, feeding for very long. He would kind of latch on, do a couple of sucks, and then fall asleep. And I remember Thinking that's, that's strange, but maybe I just assumed that that's what happens the first maybe couple of days, still a bit sleepy.

Um, and then you, is it a three day check, two or three day check? Um, a midwife came to the house, she [00:15:00] watched me latch him, she said everything. seemed okay. And she did ask about swallowing. She said, can you hear swallowing? And I said, no. And she said, well, don't worry that that would probably come when your milk comes in properly.

And then she asked about nappies. And I'd noticed that there was these kind of red, um, kind of marks in his nappies. 

Emma Pickett: Urate crystals, I guess what you're describing. So, so we do sometimes see brick red dust in nappies when babies are super little, but ideally not beyond day three at the latest. You know, we wouldn't expect to see them beyond that.

So you think she probably was seeing them around that midwife check isn't normally as early as day three. So, but you think it probably was day three for you. 

Katie: So it was, there was initial midwife check that I think was around day three, and then we went to, I think it must have been day five or six where he [00:16:00] was weighed.

So it was, there was two, one where she came, the first one where she came to our house and the second one when we took, took him to the, the surgery. Okay. Um, and she asked about nappies and we said about the, the brick dust. And she said, oh, no, no, don't worry, um, that's fine at this, this stage, just keep an eye on it.

And she also talked about, um, meconium and we said it was still kind of greeny, um, it's quite dark.

Emma Pickett: That was, I'm sorry, I'm not expecting to remember every single day here, but I know there are some people in breastfeeding support going, okay, what day is this? Let me just write down what day is this happening?

So that the still seeing the dark color, that was day three, that conversation's happening? 

Katie: Day three. Yes. Okay. And she said, well, this is probably transitioning because if it's turning a green color, so not to worry. And she left, [00:17:00] um, and we felt pretty, pretty good. And she, she left us with the expectation that he would probably be cluster feeding that evening and that's where he would do the work to bring the milk in.

So. We thought, right, everything seems to be on track. 

Emma Pickett: You're expecting breasts to start changing any moment now. All this going on about engorgement and, you know, breasts feeling really full. You're anticipating that any moment now. 

Katie: Yeah. And then we had the, um, that night, And then he really did start wanting to latch a lot, but what he was doing as he was latching and then he was sucking for a very short time and then he would come off the breast and then fall asleep and then wake up about 20 minutes later and cry and want to latch again.

And that, that happened, [00:18:00] that was, yeah, the pattern all night. And then we were given a breastfeeding support line, um, a local one to ring and, um, I rang it and they said, Oh, well, this, this is normal, sounds normal. He's probably just drained your breasts of milk, give him to your husband, take him away for an hour, let your breasts fill back up again, and come back.

So that's what we did and then yeah, he was pretty sad for the next couple of days, and we rang this helpline again, and then there was nobody, it transpired that there was nobody able to take the call, so it was just Um, being rerouted to the delivery suite at the hospital where I gave birth, which they were unable to answer questions like that.

And then the [00:19:00] following day, which I think was day five, then we had the, um, the midwife appointment, the second one where he was weighed. 

Emma Pickett: You're being very kind, answering all my really practical questions. Questions, all the information questions I'm bombarding you with. And I'm aware that I am using you as a source of data rather than, you know, respecting you as an individual going through all these emotions and feelings.

I mean, how were you feeling emotionally at this point? Sort of day three, day four, you know, he's unsettled. I'm guessing you're still not seeing a lot of nappies or hearing swallowing day four? 

Katie: No, um, the midwife actually called us to see how we were getting on day four, and we said, um, you know, it's still not, nothing's really changed.

And she said, no, don't worry. Um, you know, it, it will, it sounds like he's doing his job, um, with the cluster feeding. Um, and I knew something was, something wasn't quite right. I didn't know [00:20:00] what it was. I never really, it never crossed my mind at this point that he wasn't getting enough milk or, I don't, I don't, I can't really remember what I was thinking to be honest, but I knew something wasn't quite right.

I wouldn't have guessed. been able to articulate that I thought that he was, wasn't getting enough to eat. Um, and then when we went to have him weighed on day five, Yeah, deep, I think deep down I was, I knew that he, he wasn't, he was going to have lost a lot of weight, I think. And then they, when they said it hit me like a ton of bricks, but, um, it did explain things.

Emma Pickett: Yeah. I mean, 11 percent actually is, is less than I thought you were going to say, because quite often if, if really we haven't seen any change in breasts and we're not seeing swallowing and nappies aren't really shifting to that lovely copious mustardy yellow, you know, by day five, we might even see. 14, [00:21:00] 15 percent weight loss.

So I'm not at all dismissing the horrible experience of being told that you have to go on a feeding plan and you're getting 11 percent loss. Um, but, um, you know, some people might be listening, going 11%, that's not, that's not, you know, 10 percent is the threshold for doing anything. Um, so 11 percent is, is awful, but some people would experience even more loss than that.

So that session with the health, with the midwife then. What were nappies happening? Do you remember what nappies were doing at that point? How did you start to see any yellow by that point? Um, 

Katie: on day five, I can't remember. I can't remember what they were like. I think there wasn't much change, um, from day three, but I don't explicitly remember exactly.

Emma Pickett: I can't, I can't think why you didn't Katie, come on, it's not like you've got anything else to worry about, like baby blues and recovering from a birth, uh, instrumental delivery. Yeah. I don't worry. I'm not expecting you to remember everything in detail. But, but obviously in that meeting, something, you know, the midwife was worried enough to, [00:22:00] to suggest a feeding plan.

For anyone who doesn't know, explain what triple feeding is. 

Katie: So, it is where you feed the baby. At your breast, then you top up with, um, a bottle, either formula or for some people I guess it's express milk. And then you express milk by pumping after. So at that point, had they suggested it? I think they were, at day five, they were still white.

relaxed in terms of it will, it will happen. I remember she was, the midwife got me to hand express into, um, into a pot to feed to Ezra via a syringe then. And we saw that there was milk there. So she was like, Oh, it's fine. You know, there's milk there. You just need to like increase your supply. [00:23:00] And the, the suggestion was to, um, feed him at the breast and then Top up with, um, 30ml of formula after each, each one and to go and to go home and that's what we should do.

And she said apart from the very first bottle which said to give 90. And then after that, just top up with 30 and she said, you know, don't worry, you'll be able to cut down the bottles and eventually, um, you'll just be breastfeeding. So that was the, that was the advice at that point. I think it was the next day that we had to go back again for him to be weighed.

Um, and for her to see that she, um, sorry, Ezra had put on enough weight in that 24 hours. 

Emma Pickett: Yeah. Yeah. Okay. Well, [00:24:00] obviously 30 mils after every feed and 90 mils, you know, first of all is going to certainly help with that weight gain, but it, it feels as though, I don't know how you feel about her saying, Oh, you'll be exclusively breastfeeding.

When you look back at that, did that feel like a kind thing to say? Or do you look back and think, hang on, why did a midwife not know what IGT was? Why was no one looking at me? Why was no one, you know, watching me feed and looking at my breasts? I mean, how do you feel when you think back to that, that conversation?

Katie: I do find it. Surprising. Yeah, so many midwives saw my breasts, but I guess that that's the nuance of this condition. There's no, as you were, you know, alluding to earlier, there's no textbook. image of, I guess, what they can look like or what that can mean. It wasn't until I saw the lactation consultant where she, I think, asked about, did my breast change in pregnancy?

And I said, no. And she said, well, that's one of the markers that, um, that [00:25:00] would indicate somebody might have trouble breastfeeding when the baby arrives. 

Emma Pickett: Did you have any changes after baby was born? Did you have any engorgement? Did you remember? 

Katie: Um, I did. I think after that day three, maybe. I think I did wake up in the morning, and I Breasts were different.

They weren't significantly different, but they did, they were hard. I remember those early days, weeks as well, they, I would leak, like certainly first thing in the morning. But yeah, it was quite dismissive of, and I think in those early days, I felt like I was doing something wrong. I was like, I must have missed something.

Have I not been feeding him enough? Is it, is it me? Um, I must, everybody keeps saying, you know, this will happen. And I kept being, I kept thinking to myself, I must I've missed something. I must be, you know, what could I possibly, what do I need to do to make this [00:26:00] happen? And it was very confusing.

Emma Pickett: Yeah. So the feeding plan for the midwife wasn't even any expressing, it was just adding in formula.

There was no additional stimulation at that point.

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And my last two books are about supporting breastfeeding beyond six months, and supporting the transition from breastfeeding. For a 10 percent discount on the last two, go to Jessica Kingsley Press, that's uk. jkp. com and use the code MMPE10. Makes milk, pick it, Emma, 10.[00:27:00] 

So I'm just imagining a world where you couldn't afford a lactation consultant. Let's imagine Katie in Parallel Universe couldn't afford a lactation consultant, carried on adding in the formula, probably not breastfeeding. After a few more weeks at all, um, and not ever getting an answer, not ever understanding why, and or even more scary, you know, not necessarily wanting to give the formula, believing that your milk supply would have increased sufficiently, reducing the formula.

And as we're getting unwell, or even being dangerously unwell, it's a, it's a scary scenario to imagine that you would have been left in the dark like that and not got the information you needed. 

Katie: Yes, I think that was the, the overriding message was start off with giving this much formula, slowly reduce, and you'll find that your milk will increase.

But it was very clear when we started giving him formula that, [00:28:00] um, 30 mils wasn't enough. We were trying to really kind of do the responsive bottle feeding, and yeah, he was, he was hungry. And we just had to give him more, which was different to what the midwives said. Um, we were just going off our own instinct, um, I guess, and then with the formula that he was having, he really quickly put the weight back on and I don't think it was very long before he was back up to birth weight considering he'd lost 11 percent by day five.

And then it was a case of, Oh, brilliant. Well, well done. Um, he's going to be discharged now. And in this time I've seen a different midwife at every [00:29:00] appointment. I think maybe the most I, I saw the same midwife as twice. And that was just the one, um, the, the, the midwife who originally weighed him. I saw her again the next day and then not the same person.

So what I was having to do is go into a new appointment. And. explain the situations and he'd lost his way and we've been trying and as I was explaining, I was just breaking down in tears, couldn't even get the words out. And yeah, the fact that knowing that he was starving for those five days and then I remember one midwife saying, well, I'm going to discharge him because he doesn't need to be under midwife care anymore.

He'll be under the health visitor because he's back up to the weight that we expect, I think. Um, but she said, I'm not going to discharge you because you're clearly [00:30:00] Um, you're clearly struggling and maybe you feel like you need a little bit more support. I don't know whether she meant breastfeeding or mental health.

And I remember thinking, Oh, brilliant. Like somebody's going to help me try to figure out where I've gone wrong. And you know, how, how, This came to be and how he ended up so hungry. And then the next appointment was somebody different again. And then I went and I explained what happened. And again, retelling the story for, you know, goodness knows, you know, how many times, and she said, Oh, well, you know, it all seems fine now.

I don't really see why you need to be under midwife care anymore. I'm going to discharge you. And without, she said, you know, just basically keep doing what you're doing. You look like you've kind of got it under control. And I don't know if that's the first time I've managed to tell the story without sobbing.

And so everything kind of seemed fine or whether, you know, she [00:31:00] just looked at the numbers in the book and thought it's fine. And then I was, and then you go into the health visitor stuff. 

Emma Pickett: Gosh. I mean, breastfeeding is just so not cared about in this conversation. There's just numbers in a book and I know it's, it's so hard to have these conversations without sounding like I'm criticizing individual midwives who are under so much pressure, but there's no doubt that there is a flaw in the system that thinks that you are okay.

You know, your formula quantities are increasing. You wanted to breastfeed. No one seems to be listening to that. It's almost like you're saying, Oh, you know, I fancy doing a bit of knitting, just to know that's a, that's an optional extra, a bit of a hobby you might be into, but no one seems to care about his breast milk intake and what might be happening.

And the fact that no one's even saying, how about you do some expressing while this formula is increasing in quantity, no one's even saying that. And no one's certainly, all these different midwives, no one is thinking about your, you know, your medical history or your breast shape. It's just, you were really let down, Katie, and [00:32:00] I'm so sorry that that was your experience.

I'm so sorry. So you were discharged by the midwives and you got home and thought, hang on, I, I need more. This is not working. And you decided to call a lactation consultant, so that, I'm guessing that's a private lactation consultant you had to pay for. 

Katie: Yeah, and then she came really quite quickly, I think maybe the next day after, um, I got in touch with her.

And then she dove a little deeper and, um, you know, asked questions and looked at my breasts and watched Ezra latch. Yeah. So, uh, put in the triple feeding plan.

Emma Pickett: Okay. So if this is the first time anyone's talked to you about increasing your milk supply or protecting your milk supply or pumping, after all those conversations with different health professionals, this is the very first time?

Katie: I think 

pumping was 

mentioned fairly casually or hand expressing, not in [00:33:00] a way that, I mean, it didn't really make. Oh, you can express, you can hand, you know, pump or hand express and I'm like, can I? I didn't really know what that should have looked like until I saw a lactation consultant. 

Emma Pickett: Yeah. When no one is saying, because you're giving the formula, your supply is at greater risk and therefore we need to add in the pumping for that reason.

No one has joined up that dot until you've had this conversation with the lactation consultant. So, she mentions Dom Peridone to you. Um, now this podcast is listened by different people in different countries. Some people will live in a country where there is zero chance of ever getting Dom Peridone.

Some people will live in Canada where they may be able to get it in larger quantities. Tell me about your experience of getting it. 

Katie: Um, very straightforward. Um, I rang my GP. And said, I've seen a lactation consultant and she recommended, um, to take this. [00:34:00] And she gave me the, the recommended dose as well.

And I should be taking this many for this. I think initially it was two weeks, if I remember rightly. And the GP said, yeah, um, she did with the kind of understanding that it's, it's not for lactation, um, it's for something else. So, you know, it's really. Um, off what we recommend, but, um, I'm happy. She said that she was happy to, um, happy for me to give it a go.

Emma Pickett: Good. So that's that what we call sort of off label use of the drug. So it's a drug that's normally given for reflux and sort of gastro issues. And, and, um, lots of people take it worldwide, including some babies take it. So we know it's not dangerous in terms of giving the baby small quantities of it through your milk, but it's not, you know, Safe for everyone to take it, depending on what medications they're taking and, and there's some people with certain heart conditions shouldn't take it.

So everyone needs to do their research. But it is a drug that seems to have this [00:35:00] interesting side effect that it increases prolactin and that's the hormone that we need for your milk supply to increase. But I'm guessing in the UK you probably took three pills of 10 mg of each, each day and no more than that.

So with the doses are quite low compared to what happens in other countries. I guess it's hard to know if it made a difference because you're doing lots of other things at the same time. But was it something that you did feel was helpful? 

Katie: Um, I don't know. I wasn't ever at this point, certainly monitoring.

any kind of what I was expressing, um, or really formula that I was giving, I don't think at this stage. So I, I don't know if, if it did make a difference or I think my milk supply did increase, um, between day five and those first early months. I don't know if it was the [00:36:00] Domperidone. I think, I can't remember how long I ended up taking it for.

I definitely had a repeat prescription, maybe even for a third time, and then I stopped taking it, and I can't remember why I decided not to do it anymore. But I think I did take it for about six months. Six or eight weeks I would say. 

Emma Pickett: That's quite, that's quite a long stint. So, so you're pumping after you've seen the lactation consultant Are you managing to pump after every feed?

How did you manage with pumping? 

Katie: Um, I did. We, we hired a hospital grade pump and you kind of plug into the wall and I luckily had a husband who was able to do everything else whilst I was sat on the sofa and I did it for two weeks, I think, um, and I got to the end of the two weeks and said to myself, [00:37:00] I can't do this anymore.

Yeah, fair enough. I think what was hard is I didn't, which I think made me stop doing it maybe earlier, perhaps then. Maybe I would have, was that I didn't have, nobody gave me a stopping point. Nobody said to me, do it for this amount of time or until you see this difference. And if you don't see this, then stop.

It was just a suggested, you should do this because it may help increase your milk supply and then just left as that. And I didn't know, I was like, is this even working? It's not a pleasant thing to do, um, around the clock. And I remember thinking to myself, that, you know, this was, yeah, in the first maybe two to three weeks after Ezra was born, I had these visions of me going out and doing all this stuff with our new baby [00:38:00] and showing him off to the world and, um, you know, imagining all these things.

You know, when you're pregnant and I just thought, Oh, I'm sat on the sofa and I just had this overwhelming panic of, I'm never going to get this time back again. Um, you know, my husband was still on paternity leave. Um, and I just kept panicking that I thought we, we, we were running out of time when we, we should be out enjoying, enjoying things with just the three of us in this bubble, not sat on the sofa.

And that was my panic, and I had no end point. Um, and I just, it was just looming that this was going to be my life forever. So, I kind of decided quite quickly that that wasn't for me. 

Emma Pickett: Yeah, no, fair enough. That makes sense. Yeah, I mean that's one of the downsides of seeing a private lactation consultant is you, it's not always clear whether you can see them again, um, and you know, [00:39:00] follow up is often available, but it's different lactation consultants will do in different ways.

So in this period of time when you're triple feeding, how are you feeling about the breastfeeding? What was happening when Ezra was coming to the breast? 

Katie: It was, yeah, it was challenging. He was quite fussy at the breast. Um, it was quite difficult to latch him, I think for a variety of different reasons, you know, just being really inexperienced and having a wiggly newborn and their hands get in the way.

And, um, and, you know, As well as him sometimes, I think, probably being maybe too hungry to, um, maybe want to latch on when there was not loads and loads of milk. Um, but I think what happened quite quickly was that [00:40:00] he, he actually really did like, you know, Being at the breast, once we kind of figured out, um, yeah, got into a groove a bit.

Yeah, I think he quite, he quite liked it, and he quite liked being there, and he was quite happy to stay there. And I had to take him off the breast a lot of the time, and offer him a bottle where, whereas maybe he would have stayed on there for a little bit longer, and, um, just had a nice time. 

Emma Pickett: Yeah. 

Katie: Uh, with doing like little flutter sucks and comfort sucks.

Emma Pickett: Yeah. That's, that's a lovely image actually and I'm really glad you shared that because I think that's so important that actually that is his home, that's his default position and, and whatever's happening with milk supply, babies can be very happy to be there and, and comfort suck and flutter suck. And, and if you're combination feeding, you know, the boring old nutrition bits.

happening with the bottle and the, the lovely oxytocin, oxytocin connecting, [00:41:00] lovely fluttery bit is, is at the breast. And it's really special that he was happy to be there. And I'm guessing it felt good for you too. And that connection felt good. Or were you feeling uncomfortable about breastfeeding because it wasn't going right in adverted commas?

Katie: I think the fact that it wasn't going right, that I really held on to any breastfeeding that I could do. was so important to me. And it is, um, it's so funny how, you know, I mentioned earlier how I was really ambivalent about breastfeeding, but when I was pregnant, like, Oh, if it works out great, if it doesn't, then that's fine.

It was absolutely not the case as soon as He arrived, it was just all of a sudden the most important thing to be able to do. And when it didn't work out, it was absolutely devastating. I think is the, it's the only answer that I can give that is just flawed me. [00:42:00] And Those early weeks of doing the triple feeding and just feeling so inadequate and so sad, I think is the, is the word to use as well.

And I remember people, midwives and, and things kept saying to me, Oh, he's really lucky that you're, you're persevering. Um, oh, isn't he lucky? And I just remember hearing. them say that word and thinking he's not lucky. If he was lucky, then I'd be able to breastfeed him. And so I really didn't, I don't think I put him down for, oh, I don't know, probably the first couple of months.

I was just so anxious then, I think. And I think what Had happened in not being able to breastfeed him and him losing loads of weight in that kind of moment in that first week The [00:43:00] impact of that was it made me lose confidence in any type of Maternal instinct that I had I just did not trust myself to know that I've just, every time he cried, I thought there was something probably wrong.

Every kind of noise that he made. I rang the GP, I made an appointment with the GP for Ezra, oh, I would say close to ten times in the first two or three months of his life, because I was just convinced there something wrong with him. And I missed it. Um, so I was just down every night, down to the GPs, me again.

And they would say, no, he's fine. 

Emma Pickett: Yeah. You described that very vividly. And, and that experience of having that horrible meeting where someone says, hang on, your baby's lost weight. Your baby's not getting enough milk. That's a, that's a traumatic experience. And, you know, a version of PTSD, I [00:44:00] think is often what people.

parents do experience after that. Um, and you know, I'm not a psychologist or a psychiatrist, but I'm going to amateurly use that word. I mean, you're describing recovering from the trauma of that and, and, you know, not, not knowing what was happening and, and realizing you're in a scary place. Um, I mean, when the lactation consultant talked about, your condition.

Did that feel any sort of relief? Did that release you from that sense of responsibility that, okay, well, that's, that wasn't my fault then? Was there any relief that came from that label? 

Katie: Um, I guess maybe initially, but then I think there was also the, the finality of, of that news. I think that there was really potentially nothing that could, could be done about it.

And that then, I guess, Brought its own set of feelings, so on the one hand, yes, [00:45:00] it relieves you of, you know, it wasn't your fault, but also that this is, you know, There's no hope that's the kind of duality of that. Yeah. 

Emma Pickett: Yeah I mean one thing that I would just just say to anyone listening to this is actually breasts are Bizarre and that they can actually change through someone's lifetime So there's a very famous lactation consultant called Nancy Moorbacker who when she was a younger woman Had very asymmetrical breasts, not much glandular tissue in one breast at all.

Had a, an implant put in that breast. And then later in life, she was having a mammogram and they found that the implant had moved to a completely different part of her chest. But yet her breast had grown in place where there wasn't a breast before because she'd breastfed for, I think it was 12 years. So breast feeding grows breast tissue.

So you now have more breast tissue than you did when Ezra was two days old. And if you have a subsequent pregnancy, you'll have more breast tissue [00:46:00] again. And so I don't want someone to think that if they've got IGT, aspic and they're never going to change. Breasts do actually shift and change and all that work you were doing by continuing to have him latching on, even if he's doing flutter sucking, there's breast There's prolactin happening, there's prolactin stimulation happening.

That was helping to go in the right direction. Did you feel at any point, um, right, I'm not going to be exclusively breastfeeding. I'm don't, I'm guessing it was around the time that you decided not to triple feed. You just realized at that point exclusive breastfeeding probably wasn't in your future. How did it feel to sort of let go of, of that thought?

Katie: That was, yeah, I feel a bit of a release perhaps. Um, but the next. thing that I kind of got obsessed about was how much formula he was having and I think there was still very much mixed messages happening with people I've seen. At this, between, after seeing the lactation [00:47:00] consultant, I saw somebody from the infant feeding team and they Were kind of alluding to that I could perhaps just drop the amount of formula that I'm giving him and just to basically experiment with seeing if my milk supply would increase and then I got quite obsessed with how much formula he was having and Quite a bit, not in in the way that oh that he's getting enough But I didn't want him to have too much in case he's I, my milk supply went down or didn't increase if there was a potential for it to increase.

And that was quite stressful. I was then trying to, I guess, pay for it. balance him having enough with him trying to mimic typical patterns of breastfeeding, where babies would then try and stimulate breasts to, um, [00:48:00] increase milk supply, which in hindsight would quite maybe quite a futile thing for me to do.

But that was quite obsessive and that went on for a while, maybe a month or so, where I was really upset if he seemed to take more formula than I thought that he would need. And, um, yeah, I was writing down, you know, to the milliliter how much he was having and And then I just made a decision. I think I, and I was getting him weighed every week or every other week.

And then I think one point he dropped, he was born just under the 50th percentile, and then he dropped. To the 25th and then had some, again, more health visitor conflicting advice. And I thought this, I can't live like this. I can't keep second guessing [00:49:00] myself, second guessing him. It's really not healthy.

I'm obsessively weighing him, but then also obsessively writing down how much formula he was having. And then I, something switched in me where I was like, he's just going to breastfeed. Maybe for a couple of minutes each side and I'm not going to do the switch feeding and the Hand expressing and everything else that I was trying to do to squeeze out every inch of breast milk um, I thought I'm just going to latch him and Just for a little bit and then top up the rest of the formula and he's gonna have as much formula as he wants You know by feeding responsibly And that was a real relief for me.

And I'd heard anecdotally that babies around maybe three or four months old, where there was a supply issue had a bottle preference, um, [00:50:00] because they don't have to work as hard on the bottle. And I thought to myself, if that were the case, and he did choose the bottle, it would be very sad, but at least that decision would be made for me, like he would have made that decision and then I would just have to get over it rather than, you know, me making any decision.

And I was not hoping that that would be the case, but hoping that the decision would 

be out of my 

hands. 

Emma Pickett: That makes perfect sense. You're, you're just having to intellectually, intellectually work so hard on you. Every milliliter, writing down every comment, it's just so much mental labor. It makes perfect sense that you just want to be released from that, almost put it into fate's hands and just see what 

happened.

Katie: And then he never did. He never got a bottle preference. In fact, I would say it was the. the other way around at certain points, which brought another lot of stress. Um, but yeah, and he [00:51:00] is nearly two and he, we're still breastfeeding. Um, and if somebody had said to me that in two years time you would still be doing this, I would never, ever have believed them.

But here we are. 

Emma Pickett: Yay! 

So as a fan of breastfeeding toddlers and older children, yay! But, but what, what a booby monster. I mean, if anyone's going to get a booby monster label, it's, it's Mr. Ezra because he was like, yeah, okay, I'm not going to fill milk supply. I don't care. This is my home. This is where I want to be.

This is what I love and I'm going to stick with it and you watch me stick with it. So that is a very, very happy ending to this story. So, at the moment then, I'm guessing he's not having a lot of formula or, or none at this age? When did you stop giving formula? 

Katie: Around about 12 months and then he went on to, then he had some cow's milk, but he took to solids fairly easily and quite quickly was [00:52:00] eating a lot and a range of different things.

And also, luckily, the weaning on to solid diet. Went smoothly, you know, I've heard different stories of different experiences, but with Ezra it was fairly straightforward I don't remember there being any issues and now he eats A balanced diet, drinks. He doesn't really like cows milk so much. He just maybe has a few sips if we offer it to him, but he's not too fussed, drinks plenty of water.

Um, and yeah, that's his main. 

Emma Pickett: What's his breastfeeding pattern at the moment? 

Katie: So mostly, um, before his nap and before bed. And then sometimes when he comes home from nursery, um, if he's He's fallen over and hurt himself, um, but It's not, not that often. I mean, I'm working, I work four days a week, [00:53:00] um, and he's at nursery four days a week.

And then if he, if we're out of the house and we're busy, which we often are on the weekends, he doesn't seem to remember about Boob. But yeah, when we're at home, if he's feeling tired, feel a bit unsure, then he'll, he'll let us know. He'll ask for it. 

Emma Pickett: Okay. So a very typical little person with their attitude to breastfeeding.

Yeah, that's, that's, I mean, how do you feel about if you, if you were able to sort of go in a little time machine back to yourself in the first few weeks? What would you want to say to yourself in those early few weeks and months about breastfeeding? 

Katie: Oh, I think it was worth sticking with it. It was worth the, the heartache and the, you know, mental strain of trying to come to terms with not being able to breastfeed, was trying to breastfeed and, um, um, yeah, it was.

It was definitely worth it, and, um, [00:54:00] I'm proud of myself for sticking with it, although it has not been easy. The biggest thing for me, I think, was reframing breastfeeding as not for nutritional purposes, but for everything else. And, um, it was really, really hard. to do and it took a really long time, but seeing it as Yeah, anything but nutrition was really helpful and having my husband do the same.

I think I would have stopped Several times over the last two years, but he always said to me You know you can but it's really handy to get him to sleep. It's really handy when he's really upset Um, he loves it so much, you know, just think about it and, and he's really made me think, oh yeah, actually reminded me that there's so much to consider with it.

Emma Pickett: And [00:55:00] just from Ezra's point of view as well, you know, he. He is all for it. It does sound like he's a card 

carrying member of the club. 

Katie: Yeah. 

Yeah. I mean, it sounds like Ezra is the one that actually helped you to reframe how you thought about breastfeeding. Is that, is that fair? Not to dismiss you of not doing work as well, but ultimately his keenness and his enthusiasm for being at the breast helped you to realize the value of that and how important that was to be there.

Yes, I guess it gets, it's easier as, as they get older and then you get that feedback from them, you know, when they're tiny babies, it's so difficult to know if you're doing it right or doing anything right. I mean, that's what I found. Then they get a bit older and they get older and then it becomes a bit easier and it becomes clearer what they like and then they can talk and then they can tell you what they like and then that, you know, makes it clear again.

I mean, now he, he, he absolutely, [00:56:00] he says hello to my boobs, he said hello boobs and he gives them kisses if he sees them, even if he doesn't want boob at that time, it's just a funny little thing that I never thought, I never thought that would be part of breastfeeding. When I was really kind of grieving that the loss of being able to exclusively breastfeed, I never thought that that was something that could happen.

Yeah. And I think knowing that, well, you might be, yeah, at the time knowing that I might be grieving one thing, but actually there's all this other thing, these other things that happen as well. 

Emma Pickett: Yeah. That's really special. That's lovely. And you beautifully expressed that. And can we clone your husband, please?

Because it sounds like he's a real champion and an encourager as well. Or someone who quite fancies having a toddler that's regulated and not having a tough time when he's upset. Fair enough. Um, yeah, that's, thank you so much, Katie. I'm just really in awe of, of, of your work. All the [00:57:00] processes you went through.

And I know, I know from working with families, just how that word grief you use, that's a, that is a really valuable word, I think, because it really helps us remember that even though you're still breastfeeding, you've still had some grief along the way and you've had to say goodbye to different, you know, imaginations and thoughts about what your breastfeeding journey would be.

And that is good. You know, many forms of grief. You talked about doing some research and how after the lactation consultant had told you you had IGT you went off and did some research. Was there anything particularly useful you found or anything, or any resources that you'd particularly recommend? 

Katie: There is a Facebook group which is called something like Low Milk Supply slash IGT.

Which has a really dedicated admin team who have a wealth of knowledge, all sorts of low supply issues from IGT to [00:58:00] insulin resistance and hormonal imbalances and all sorts of things. Which was incredibly helpful and they're all incredibly knowledgeable. Um, I'm not sure if they're healthcare professionals or people who have been through similar and, and have just taught themselves stuff.

But that was probably the most helpful free resource that I came across because everything else is quite difficult and conflicting. 

Emma Pickett: I'm guessing IGT and low milk supply support group is the one you're talking about I'm looking at. Yes. Yeah. Yeah. And yeah, I mean that conflicting is, yeah. And I imagine what's difficult and tell me if I'm wrong is that you meet people who are dealing with things in such an emotionally different way.

So some people are really angry that they were let down and didn't get the right information. Some people [00:59:00] are really angry that they were even told to try and exclusively breastfeed and that might've endangered their babies. Some people are angry about breastfeeding advocacy generally and the concept of promoting breastfeeding.

Other people are doing what you're doing and still breastfeeding two years on. It's such a spectrum, isn't it, of different experiences. So the idea that everybody with IGT has exactly the same breastfeeding experience just is not remotely helpful because there's such a variety. Yeah, I think lots of people assume that you don't feed for two years if you've got IGT.

Doesn't happen. And I think, and it's really helpful, I think, for you to highlight that, that some babies don't give a hoot about full milk supply. They're happy to be there, even if flow might be slower or, you know, there might be less flow at different times of the day. They don't care because they want to be connected to you and they get that enormous value from, from having that connection.

Um, that's, that's a super important message. I would just do a shout out for Making More Milk, which is a book I mentioned at the beginning. So it's a book, Making More Milk, by Lisa Marasco and Diana West. Um, [01:00:00] really useful book for anybody that might have any primary issues around milk supply. Um, lots of very practical tips about different herbs, different medications, um, helping you to identify the problem as well.

I think that's a useful resource. I think one other thing I would just say is that I do occasionally meet people in the lactation world. Who say things like, everybody makes enough milk for their baby. Everyone does in the end. There's no such thing as, you know, IGT or it's, it's just, you know, such a tiny, tiny percentage of people.

We shouldn't even be talking about it because everybody makes enough milk in the end. And that is, I think, a really dangerous message. For anyone to try and promote, I'm guessing you agree because you're nodding. Um, I mean, ultimately there is going to be a percentage of women. We don't exactly know the figures.

I don't know if you've come across that figure in any of your research, Katie, but, um, some people talk about 5%, some people talk about 10%. We don't exactly know the figures, but it is not true that everybody [01:01:00] will be able to make enough milk for their baby. But it doesn't mean everyone can't breastfeed. Um, it doesn't mean that even people who've had mammograms and have implants, sorry, not mammograms, mastectomies and implants can, can breastfeed with an SNS and for comfort, there's all sorts of options.

Um, but no, nobody in lactation should be telling somebody, Oh, you should, you can get to exclusively breastfeeding. Everyone can exclusively breastfeed with the right support. Because that message is not helpful. What would you say, Katie, to someone listening to this who's thinking, oh, hang on, my breasts are maybe a bit tubular, or I've got a big wide space between my breasts, or maybe this is me, maybe this is why my baby's struggling with weight gain, maybe this is why I can't get back to exclusive breastfeeding.

If someone's listening to this and a penny is dropping, what would you want to say to them?

Katie: I think it's about getting the right support. I don't know what that necessarily looks like, the way, you know, I saw a lactation consultant, like I said, [01:02:00] but it's such a confusing and scary time. It's in the early days of, um, you know, postpartum and, and, To have, you know, potential issues is, is something that's, um, that you're not, you're just not prepared for, um, there's no plan, really, for, it's, if this happens, I think, if you're, if somebody is worried, I think having a plan, a plan B, if things don't work out, if people are worried about their breast shape, then, um, Seek out support and have a plan B in place just in case things don't work out and if Somebody's in the midst of it then again to try and find somebody who knows who knows a little bit about IGT Hyperplasia because there's so much conflicting [01:03:00] information out there.

That's really hard to find good information amongst the sea of confusing stuff. 

Emma Pickett: Is there anything we haven't talked about that you think we should have mentioned? 

Katie: Not that I can think of. I think it's covered a lot. 

Emma Pickett: Yeah. Thank you so much for your time today, Katie. I really appreciate it. I know you don't want me to use the word lucky, but I think Ezra is lucky, if I'm allowed to say that.

You can't throw things at me, because we're not in the same room. Um, I think he's lucky to have somebody that was very dedicated. And you said you didn't put him down for three months. That sounds like a lucky bloke to me. Um, and, um, yeah. And, uh, and how, what's your plan for the end of breastfeeding? Are you imagining what that journey will look like?

Katie: Oh, very much so. It's a work in progress. Um, we've just been slowly putting boundaries in place for sometimes time. I count, um, count to 10, and then [01:04:00] we end a feed. Um, you know, if there's time constraints or you know, for whatever reason. Sometimes he's okay with it, sometimes he's not. Um, I think my next stage perhaps is.

night weaning. Um, we've read Nurses When the Sun Shines and he can recite really this, that story and he knows mummy's boobs are tired at night time. We haven't got as far as, um, implementing any of these things yet. Um, I just, I don't know if I'm ready for it to end quite yet. I'm edging probably. 

Emma Pickett: You'll know when the time feels right, I'm sure you'll have a sense when it feels right.

And I think quite often when people have had a tougher start, they're not in a rush to zoom through the end stages, you know, when if you're in a place where finally everything's in the right and [01:05:00] it's positive. You want to make sure that you're really ready before you end breastfeeding. Um, yeah. Well, I look forward to hearing how that goes.

Thank you so much for your time today, Katie. Thank you. Really appreciate it.

Thank you for joining me today. You can find me on Instagram at Emma Pickett, IBCLC and on Twitter at makes milk. It would be lovely if you subscribed because that helps other people to know I exist and leaving a review would be great as well. Get in touch if you would like to join me to share your feeding or weaning journey, or if you have any ideas for topics to include in the podcast.

This podcast is produced by the lovely Emily Crosby Media.