Alexis' story - breastfeeding a baby with a cleft palate

Today I’m talking to the amazing Alexis White from Canterbury, New Zealand, about feeding her son Flynn. Her older daughter, Norah’s birth did not go to plan, but breastfeeding did, and Norah was breastfed until she weaned herself when Alexis was pregnant again. After a victorious home VBAC birth, early breastfeeding seemed normal, but by day six Flynn had lost 11.5% of his birth weight and then failed to gain despite frequent feeds. Alexis began pumping and syringe top-ups, and at three weeks a lactation consultant identified a hard-to-spot cleft palate. Flynn was later also diagnosed with craniosynostosis. The cleft team told Alexis nutritive breastfeeding wasn’t possible, so she moved to a special cleft bottle while exclusively pumping for about a year, supported by a loaned pump, weigh-ins, and speech and hearing input, including grommets. After surgeries (craniosynostosis first, then cleft repair), Alexis slowly re-taught Flynn to breastfeed using babywearing, a nipple shield, and syringe/tube support. At 14 months he is fully breastfeeding, with ongoing monitoring of hearing and speech.

My picture book on how breastfeeding journeys end, The Story of Jessie’s Milkies, is available from Amazon here -  The Story of Jessie's Milkies. In the UK, you can also buy it from The Children’s Bookshop in Muswell Hill, London. Other book shops and libraries can source a copy from Ingram Spark publishing.

You can also get 10% off my books on supporting breastfeeding beyond six months and supporting the transition from breastfeeding at the Jessica Kingsley press website, by going to https://bit.ly/JKPbooks and using the code MMPE10 at checkout.

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

Resources mentioned - 

UK Cleft Lip and Palate Breastfeeding Support Group on Facebook https://www.facebook.com/share/g/1CbAoTyibU/?mibextid=wwXIfr 

Cleft Lip and Palate Action (CLAPA) - For the UK cleft community https://clapa.com/ 

CleftNZ https://www.cleft.org.nz/ 

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

Transcript

This transcript is AI generated.

[00:00:00] Emma Pickett: 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 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.

Today I'm gonna be speaking to Alexis. That's Alexis White from the Canterbury area in New Zealand, and we're gonna be talking about her breastfeeding journey with her son Flynn. Thank you very much for joining me today, Alexis. I really appreciate it. How are you doing? 

[00:01:04] Alexis: Yeah, good. Really good. Yeah, really, really happy to be here.

[00:01:07] Emma Pickett: I'm really showing my age here, because whenever I hear the name Alexis, I think of Dynasty and- Right ... Alexis Colby, so I do apologize for the fact that's in my brain. Right. Um, so, so you've got your l- gorgeous son Flynn. Yeah. And tell us a little bit about your family. Who's at home? I can see someone in the background now- Yeah

who's also giving you a bit of tech help. I'm guessing that's your, that's your partner.

[00:01:27] Alexis: It is. It's my lovely husband, George. Um, yeah. 

[00:01:29] Emma Pickett: Hi, George. 

[00:01:30] Alexis: So it's him and I, and we've got a four-year-old, um, girl called Nora, and then our, our little one-year-old Flynn. 

[00:01:38] Emma Pickett: Okay. Brilliant. And, and before we talk about your journey with Flynn- 

[00:01:42] Alexis: Mm-hmm

[00:01:42] Emma Pickett: tell us a little bit about your feeding journey with Nora. 

[00:01:45] Alexis: That was, that was pretty big. Um, we had a, um, a traumatic birth, um, with her. It was a home birth,

and- Oh, I'm sorry to hear that ... yeah, yeah. It was a, it was a pretty big, pretty big event. And my feeding journey, uh, really kind of healed the birth. 

[00:02:07] Emma Pickett: Okay. 

[00:02:08] Alexis: So yeah, that was a really beautiful kind of way for me to start motherhood and, and actually heal what was a really, um, traumatic birth. 

[00:02:17] Emma Pickett: Okay. Okay. I, I appreciate you sharing that, and I won't ask you to go into deep detail 'cause obviously we're here focusing on Flynn's journey today.

Mm. But it is, it's, it is really special to hear what a, a feeding journey can do, and how it can, as you say, that word healing is a very important, precious word. And b- breastfeeding ended. I'm always obsessed with the weaning- Mm ... and the ending, so tell me about her ending. 

[00:02:39] Alexis: It happened really naturally. She, um, it, yeah, when I got, I got pregnant with Flynn, um, I think my milk changed.

Um, and she was about two and a half, and I was just feeding her to sleep most, most nights, and, and occasionally throughout the night she'd wake up. Um, we, we co-slept as well. So, um, yeah, it happened very naturally. I, I just kind of, I think my supply started to, to ease, and there was one night where I, I said, "Hey, you're not really getting much out, hey?"

And she was like, "No, Mum." And I said, "Do you wanna just have a cuddle?" And that was that. She, she never really wanted, wanted it again. It was, it was pretty gentle. 

[00:03:19] Emma Pickett: That sounds lovely. And, and co-sleeping carried on after that, for anyone who's wondering. She c- she carried on co-sleeping. Does she still co-sleep now?

[00:03:25] Alexis: Yeah. Well, she falls asleep in her bed and, and always wakes up in 

[00:03:29] Emma Pickett: ours. Yeah. Yep, the midnight migration. Everyone w- who has a child of Nora's age will be familiar with that. Well, not everyone, but lots of us will be familiar with that. Yeah. Uh, thank you very much for sharing that. Okay, let's talk about Flynn.

So the title of the episode gives people a little bit of a hint as to some of the things that we're gonna be talking about, and I really appreciate you sharing your story today 'cause I think it's so important that everyone has a sense of what that experience is like. Tell us about your pregnancy with Flynn.

So you're breastfeeding Nora, you get pregnant. Mm-hmm. What happens next? Um, it 

[00:03:58] Alexis: was a, it was a pretty cruisy pregnancy. Um, as cruisy it c- as it can be when you are running around with a, a two-year-old. I was doing a lot of healing from the previous birth, um, and prepping to have a home birth. I had an amazing midwife who was supporting me throughout the pregnancy Um, and I've got an amazing family as well who was supporting me too.

So yeah, it was really, I was really just focusing on having my VBAC. Um, I didn't even think about postpartum or breastfeeding 'cause I just assumed that it would go as smoothly as it went last time. 

[00:04:33] Emma Pickett: Okay. So, so we haven't not talked about Nora's birth, but you've basically said, given away with the VBAC reference there.

So Nora ended up being a cesarean. Yeah. And, and in, in New Zealand, what's the story with home birth? You have a system that's fully supportive of it. I don't even know- Yeah ... if there's a public health system in terms of like free service. Do you, do you pay for your health in New Zealand? What's the situation?

[00:04:56] Alexis: We're super, super lucky here. So we have a system where when, when you're pregnant, you go out and find your midwife, and I turned to the home birth midwives. Um, my mom had home birth, so it was just natural for me to kind of go in that direction. Um, and yeah, they're incredible. You, you don't pay for it. Um, you work with them closely, so you only have one care provider throughout, which is incredible.

And you just, yeah, you find someone that you really feel supported by, and they, they're there for the 

[00:05:26] Emma Pickett: whole thing. That's fantastic. Yeah. So you get that sort of continuity of care, which is brilliant. And no issue with her doing a VBAC at home, that's fully supported. Oh, a little bit. Um, you know, there's no, no underlying issues.

Oh, was that a little bit of a conversation? 

[00:05:37] Alexis: I, yeah, I had a bit of kickback from the hospital, um, because I wanted to look into, um, having the option of a birth center. So that was, um, yeah, I kind of campaigned for myself to be able to have that as a choice if I, if I wanted to, uh, to transfer to a birth center instead of being at home.

Um, I live quite rural, so I, I wanted to have that as an option if I felt safer. But yeah, but in the end I didn't, I didn't need it. But I did have that. I, I managed to campaign to have myself allowed essentially to, to lay there. 

[00:06:06] Emma Pickett: Okay. But yeah Okay. And tell us about Flynn, Flynn's birth 

[00:06:10] Alexis: Yeah, so it was pretty victorious.

Um, he- 

[00:06:14] Emma Pickett: Victorious, that's a fantastic word. Don't think I've ever used any wo- anyone's ever said that word before on the podcast. I love it, victorious 

[00:06:21] Alexis: Yeah. Yeah, no, it was, um, it was incredible. He, um, he took his time. Um, it was a 25-hour labor. Yeah, and it was a real journey. I had a lot of women around me supporting me, which was incredible.

My amazing husband, um, Nora was there. It was, the birth pool was up in, in, in the lounge, candles were everywhere, and yeah, it was really, really lovely. Um, tough still, a very, very intense labor. But yeah, he, um, he came out and it was, it was, yeah, victorious I think is the, is the best word to describe it. It was 

[00:06:57] Emma Pickett: just- Oh, that's a, that's a great word.

Tell me a bit more about having Nora there, 'cause some people, um, are making the decision about whether their- Mm ... child is present at a, at a birth. What did it mean to you to have Nora there and, and what positive impacts do you think it had? And were there any challenges with that? 

[00:07:12] Alexis: Um, there were no challenges.

I had my aunt come, um, and kind of be her person, which was really special. Um, so she kind of brought her in and out when, when wherever she wanted to go. It was, it was very kind of Nora based. Um, and the whole environment was so Peaceful and supported, you know, despite obviously me being in an intense place.

Um, it wasn't scary, and yeah, it was, I think it was, in my eyes it was quite healing for the both of us. Um, I think for her to experience a really calm and healing birth as well. Um, obviously knowing that she doesn't remember hers, but, but I think the feeling around it, and her also hearing me talk about her birth, um, I kind of- Yeah

wanted her to have that experience of what birth could be and should be. It was really, really special. Once Flynn was born she had like this little, I've got this picture of her holding this wee soft toy trying to pass it, pass it to him. Which- 

[00:08:15] Emma Pickett: Hello baby- Yeah ... you're a few minutes old. Yeah. Here's, here's a toy.

Oh, that's so sweet. Yeah. So what time of day was, was Flynn born? 

[00:08:21] Alexis: He was born at 9:36 in the morning. 

[00:08:23] Emma Pickett: Okay. Yeah. So she'd been, presumably got a bit of sleep, and then arrived at the key moment. 

[00:08:28] Alexis: It

was quite early as we all just crashed. It w- everybody obviously except for me, just crashed on the couch in different spots. I think at one point she fell asleep next to me as well, which was, was really sweet. 

[00:08:40] Emma Pickett: Oh. 

[00:08:40] Alexis: It was a journey. 

[00:08:41] Emma Pickett: Oh, that's lovely. Yeah. It was, that sounds great. And, and then when Flynn came out, obviously you were a breastfeeding mum.

Mm. You'd breastfed with Nora. Your breastfeeding with Nora had been really key and really positive. Mm. So breastfeeding I'm guessing was something you were really looking forward to. Yeah. And something that really mat- mattered to you. And tell us about those early attempts at f- at feeding Flynn. 

[00:09:01] Alexis: Um, yeah, so I was, I was so excited to breastfeed another wee newborn, and I just didn't second-guess it as being i- as I just thought it would be, you know?

It would be what it was, which was, you know, a great birth- breastfeeding experience. Um, 'cause I couldn't, I couldn't, um, imagine it being anything other than that. Um, when he first came out, he latched great, and the first 24 hours were calm and sleepy and beautiful, and we were all in our wee bubble, and it wasn't until day, I'd say probably three or four when he started to kind of wake up a little bit more, um, that I started to notice that he was pretty unsettled on the boob.

And I thought this was just like a latch kind of thing, that we were just like figuring out our groove, and that it would just, we'd just kind of, we'd crack it. But yeah- He was just super unsettled And 

[00:10:00] Emma Pickett: I'm guessing as early as day three you're noticing maybe nappies weren't what you'd expect them to be as 

[00:10:05] Alexis: well?

Nappies were okay. Um, everything kind of- Okay ... pointed it to it, him still being fine other than him just being pretty- Okay ... annoyed on the boob. 

[00:10:15] Emma Pickett: So the team that help you, support you with your birth, is there an equally great team with feeding support as well? 

[00:10:20] Alexis: Yeah, so, um, in New Zealand our midwives stay with us until six weeks postpartum.

So they- Oh my goodness- Yeah. ... I'm so jealous. That's fantastic. I know. We, uh, we're so lucky here. Yeah, I think it was the next day. Uh, we, we have a backup midwife as well who comes for home births, so I had two amazing midwives who were, who were supporting me, and then, um, there was ano- another midwife as well who came from the home birth, um, midwives, I think 'cause the, the, my other two were in birth.

So it was, it was an amazing community that, that was really there with me kind of helping me. 

[00:10:53] Emma Pickett: So there's- we're trying to work out why he's unsettled, and they're- 

[00:10:57] Alexis: Yeah ... 

[00:10:57] Emma Pickett: presumably you get a postnatal check for baby as well, and someone's looking in his mouth. At what, at what point did things start to kind of click together?

[00:11:05] Alexis: It wasn't until day six that he had his weigh, um, and he was 11.5 below birth weight. So that- Okay ... was the real kind of there's something going on here. Um, he, uh, my midwife didn't do, uh, he, she didn't look in his mouth, um, at that point. She kind of looked everywhere else, but that was, um, the one place that, um, yeah, she didn't, didn't look into, which in hindsight I'm grateful for because it, it gave, so for the, the next two weeks were, um, were pretty intense.

[00:11:39] Emma Pickett: Tell us a little bit, before- Yeah ... before I ask you about the next two weeks, it's interesting to hear you say that you're grateful nobody looked in his mouth. Is that because- 

[00:11:46] Alexis: Yeah ... 

[00:11:47] Emma Pickett: you ne- you, you were in that positive bubble, and you, that was a good place to be- Yeah ... kind of thing, and you didn't necess- you think, is, and, and some people would be like, "What?

Lady, that doesn't make any sense", but, but I guess psychologically you, you had those moments of positivity and, you know, his, his nappies are okay, and he seems to be okay. Mm. You didn't want to have that bubble burst. Is that what I'm i- imagining? 

[00:12:08] Alexis: Yeah, and I also think that not knowing for the first three weeks set us up better for breastfeeding as well long term 

[00:12:18] Emma Pickett: Okay.

Tell us a bit more about why. Why do you think that was? 

[00:12:22] Alexis: Um, so it was when he was three weeks old that we got the diagnosis. Um, and at that time I was not comfortable with them, so I, I never used any bottles with Nora. It just wasn't something that I was familiar with doing, um, and something that, um, I wanted to do, so I just, I just didn't.

So it, the idea of, of using them made me feel a bit uncomfortable. Not that I would ever, ever, ever judge any mum who does bottle feed, it just wasn't something that I was expecting to do. Wasn't 

[00:12:53] Emma Pickett: your world. 

[00:12:54] Alexis: Yeah. Yeah. Yeah. So, um- 

[00:12:55] Emma Pickett: Yeah. Okay ... I 

[00:12:57] Alexis: think I had a 

[00:12:57] Emma Pickett: lot of- Okay. So actually, we're j- I was just gonna say, we're, I'm jumping around a little bit here- Yeah

with my questioning, which isn't, which isn't helping you. Let me go back to 11.5% loss- 

[00:13:07] Alexis: Mm ... 

[00:13:07] Emma Pickett: in that, in that first week. Mm. Um, and presumably someone saying, "Okay, something's going on here". But then you're saying it's not until three weeks that you had the diagnosis of the cleft palate. Yeah. So I'm just trying to work out what's going in g- for those two weeks, pretty much, what's happening in the middle there.

Um, so 11.5% loss. Okay, Alexis, we need to have a think about what might be going on. So what happened first in terms of your support? What, what are people doing? 

[00:13:32] Alexis: So at that point, um, I had just, I'd spent the last four months preparing for birth, preparing to be, like, confident in my body and my body's ability to birth my baby.

And from my experience being in the hospital with my previous baby and being discouraged from breastfeeding with her, I, when I heard the midwife say, "There's something going on"- 11.5 low, red flag. My first response was to, to just think, "Okay, we need to have a bit of time. We need to figure this out, and this isn't gonna be a problem."

[00:14:09] Emma Pickett: Okay. 

[00:14:10] Alexis: Does that make sense? 

[00:14:11] Emma Pickett: Yeah. So you had a really powerful sense of self-belief- Mm ... confidence in the process of breastfeeding. Mm-hmm. That's not a bad, that's not a bad thing. Um, especially if you've got a big support network around you- Mm ... um, they're gonna be, you know, giving you a safety net if you're going in the wrong direction.

So you basically thought, okay, presumably it's latching, something else. You just carried on working on positioning, working on feeding frequently. You've already mentioned that bottles don't, don't feel like your normal, so you're certain- I'm guessing you're certainly not supplementing at that time. 

[00:14:40] Alexis: No, not at that point.

And it did, it did, it just felt like there was something with the latch that was just not quite right. I remember saying to my midwife, "Can we just give it ano- another couple of days of just trying to figure this out, um, and just monitoring his weight before we look at going to the pediatric hospital?"

[00:14:57] Emma Pickett: Okay. And you're not in pain? What's happening with you? 

[00:15:01] Alexis: No. 

[00:15:01] Emma Pickett: You mentioned that he's unsettled, but you're not un- in pain. 

[00:15:03] Alexis: No, I was, I was, I was great. I was still on a high from the birth, and yeah. And it wasn't uncomfortable, breastfeeding wasn't uncomfortable at all. And he was getting milk as well. I, I, my, my supply had come in, um, and I could hear him having letdowns too, so it wasn't, um...

Yeah, we were monitoring that way. It wasn't as if he wasn't- Okay ... wasn't getting input. 

[00:15:26] Emma Pickett: So he's getting a letdown, he's swallowing what he's receiving. 

[00:15:29] Alexis: Yeah. 

[00:15:30] Emma Pickett: And, and nappies carried on being okay, just because you had a good milk supply and he was swallowing the letdowns? Yeah. Okay. Yeah So tell us about those two weeks in between that, "Okay, there's a red flag here", and the diagnosis.

What happened in those two weeks? 

[00:15:43] Alexis: Yeah. So the following, uh, two days later, um, my midwife came back and, and re-weighed him, and I had had him on the boob solidly for those two days just trying to chunk him up. Um, and at the re-weigh he was the exact same weight. Um- Mm ... so at that point we said, "Okay, we, we need to do something else here."

So I started to pump, um, and started to supplement him with, I think it was 30 ml top ups. Um, and we were using a syringe. 

[00:16:12] Emma Pickett: Okay. 

[00:16:13] Alexis: Yeah. 

[00:16:13] Emma Pickett: And, and it, I guess it's all a bit of a mystery. It must have been quite confusing for you as to what was going on. I mean, when you see him not putting on any weight at all.

Yeah. But yet no one's, still no one's looking in his mouth. We don't have any tongue tie assessments going on. No, no one's looking as what, what might be happening. 

[00:16:30] Alexis: Yeah, I think actually she did have a look in his mouth, um, but because his cleft was so far back, um, I think it was pretty, pretty tr- tricky to spot.

[00:16:39] Emma Pickett: Okay. So you're supplementing with a syringe. 

[00:16:42] Alexis: Mm. 

[00:16:43] Emma Pickett: You're tr- obviously current continuing to breastfeed. At what point does, does that diagnosis happen? Tell us about that, that experience. 

[00:16:50] Alexis: Yeah. So we, we kept doing that for, yeah, it was, it was about two weeks. Um, and it was, we just kept increasing the supplements, and it was, it was a lot of work.

And yeah, at one point I reached out to, um, a La Leche League worker who was amazing and, and super helpful and supportive and gave me heaps of tips, 'cause we still just thought it was a latch thing, so she was giving me lots of advice, calling me every night. Yeah, that was, that was a really, really hard, hard couple of weeks.

[00:17:22] Emma Pickett: Yeah, I bet. And then at some point you say, "Okay, we need to take a closer look at that", and someone's having a proper- 

[00:17:28] Alexis: Yeah ... look 

[00:17:28] Emma Pickett: in his mouth. Tell us about that 

[00:17:30] Alexis: experience. So my midwife, um, put a referral through to, um, a lactation consultant, and she, it, it took a little bit for, I think it was about a week for her to get in touch 'cause they are just so swamped.

Um, and when she got in touch and we set up an appointment, it took, I think we were in there for about two minutes, um, before she had a look in his mouth and was like, "Yeah, cleft palate." Um, it was pretty, pretty quick 

[00:17:58] Emma Pickett: So she's looking, and sometimes with the diagnosis, I mean, m- most lactation consultants wouldn't be qualified to diagnose a cleft palate, so I'm guessing she's- She didn't say it to me

coming from a health professional background as well. Yeah. Oh, I see. Okay No, sorry. She, 

[00:18:09] Alexis: she didn't, she didn't say it to me, but she said it to, um, she'd gotten a second opinion. I'm just trying to remember. Sorry. I think, I think she did mention it, um, but she said that, she said that she couldn't diagnose it, but this is, this is something that she's thinking it could potentially be.

[00:18:27] Emma Pickett: Yeah, yeah, which is what, obv- Yeah ... obviously if she looks inside, inside his mouth and sees it, she's not gonna keep it a secret. No, no. Um, but she probably will say, "Okay, we need to, you know, get this formally diagnosed." And, and you mentioned it's, was quite difficult to spot. I guess for somebody who doesn't know, we'll ask, we'll talk in a minute about what a cleft palate is and what's actually going on.

Mm. But for some people who don't know, it's, it is possible actually for a cleft palate not to necessarily be visible because there can be a membrane or skin over it. Uh, that's my understanding. And u- and behind that, the, you know, the bony structure may, may not be fully formed, and there may be a hole behind that.

Um, so it's not always like, "Oh my God, how can you have missed it, you daft lass? Of", you know, "How can you have had a baby that's three weeks old and you couldn't see a cleft palate?" As you say, they can be, they can be at the back, they can, it's dark back there. Mm. Babies don't always open their mouth super wide.

Um, but even sometimes when you actually look, you may not see it, and in some cases you actually put a light up a baby's nose, and then the light exposes, um, the, the cleft. So when someone said, "I think it might be a cleft palate", did you have any understanding what that meant, and, and what was your education around that before this?

I 

[00:19:32] Alexis: had none. I, I had never heard of it before. It was, yeah, totally new concept to me. 

[00:19:39] Emma Pickett: Okay. Yeah. And I mean, when t- when they said that, that sounds pretty s- you know, black and white, doesn't it? Mm. I mean, that's, there's something anatomical with my baby that means they are not able to breastfeed as easily.

That, I'm k- I'm kinda guessing there was a f- feeling of despair at that moment, but I don't wanna put those words in your mouth. 

[00:19:58] Alexis: Yeah, I think I didn't fully grasp what that meant And I kind of tried to keep my head in the sand a little bit as well, because I just, yeah, I didn't know, so I didn't, I didn't wanna kind of speculate at that point.

Um, but it definitely, I definitely kind of felt a big 

[00:20:14] Emma Pickett: shock. Yeah. So this lactation consultant connects you to a colleague, and then I'm guessing after that, in the similar way that we have an organization called CLAPA in the UK, there are charities, there are teams, there should be a cleft team that you get connected with.

How does the signposting work after that conversation? 

[00:20:32] Alexis: So we, actually she booked us in to go into the hospital that night. Um, so we, yeah, dropped Nora off with my parents, um, and headed straight into the hospital pretty much that afternoon. Um, and, uh, got a diagnosis from a doctor on the ward. It was pretty, it was very quick.

Um, he, he just looked and saw it straight away and said, "Yep." And we campaigned to go home, 'cause it was a Friday night, um, and we wouldn't see the cleft team until Monday, um, and we were still managing with syringes, um, doing the top-ups through that. 

[00:21:08] Emma Pickett: So when somebody, I'm, I'm guessing he says, you know, "Come and, why don't you guys come and have a look?

Can you see what was..." I mean, when you look inside Flynn's mouth, what do you see in those moments? What does it look like, for anyone who's not familiar? 

[00:21:19] Alexis: Yeah. So at the very back of his throat, there was just this teeny, tiny little V, um, where there shouldn't be. That's kind of the best way that I can describe it.

Where you'd, where you'd just- Okay ... see, like, essentially flesh, it's just this

small little slit. 

[00:21:35] Emma Pickett: Okay. 

[00:21:35] Alexis: Yeah. 

[00:21:36] Emma Pickett: So it's not like a gaping, round hole. 

[00:21:38] Alexis: No. Yeah. 

[00:21:39] Emma Pickett: It's just something hasn't joined up, and there's a- Yeah ... little V shape. But, but right at the back, so it's not, you know, people are often familiar with cleft lips, I think. I think culturally we- Mm-hmm ... talk about that more, I guess 'cause, uh, externally it's more visible.

And obviously some people have a cleft in their upper gum ridge- Mm-hmm ... and, and it, and it can go back further in the front of the palate, but so the front of his palate was completely intact- Mm-hmm ... or is completely intact. Nothing visible on the gum or the lip. Nothing visible at the front of the hard palate.

So we're talking right at the back where soft tissue is. Mm-hmm. A little slit, a little V, and you, and you could see it too when the doctor pointed it out to you? 

[00:22:14] Alexis: Yep, yep. It did take him having a big cry, but yeah, we could, we could see it. 

[00:22:21] Emma Pickett: Okay. So you knew that you were going to be seeing the cleft team on Monday, but you still didn't know what that meant.

You still didn't know what, what that meant in terms of surgery or treatment. You... Was anyone telling you on Friday, "This is probably what's gonna be happening", or were you just still waiting for that conversation? 

[00:22:36] Alexis: Um, we were still waiting, yeah And I tried not to Google as much as I could because it was just too agonizing to kinda speculate.

[00:22:45] Emma Pickett: Yeah. Yeah, for sure. So the syringing, I mean, good news that your milk supply's in such a good place, so you had that ex- because you'd breastfed Nora and your milk supply was so good. It sounds as though you didn't have any issues with pumping and, and syringe feeding, which is brilliant. How many times were you pumping in a, in a day?

Do you remember? 

[00:23:01] Alexis: Um, I was pumping every three hours at that point. Um, and I only had a pump that my friend had given me that was only, like, a one side at a time pump, so it was- 

[00:23:11] Emma Pickett: Oh, wow. Yeah. Okay. 

[00:23:12] Alexis: Yeah. I was, I was a, I was, um, very, very inexperienced pumper. I didn't really know what I was doing. And I think my supply did take a bit of a dip, um, because Gwen wasn't transferring very much.

Um, I had to Yeah, I was, I was trying all the fenugreek and the, I, I was very close to buying supplements but I didn't . But I was trying to drink lots of water and do a lot of coconut water and that kind of thing 'cause I d- I was noticing that it was, it wa- would take me quite a while to get milk out. 

[00:23:41] Emma Pickett: So he, was he doing any direct breastfeeding at this point?

So he's coming onto the breast- No ... and you're having a go at having him latch, but he's, as you say, not necessarily transferring when he's on the breast. You're, you're, is he still being a bit unsettled when he's on the breast? 

[00:23:53] Alexis: Yeah, because he was getting the syringes, um, he was definitely a lot more settled.

Um, and up until we went into, into the hospital, he was still breastfeeding, um, I think, like, to calm himself a bit more and, and but not, not fully to get feeds because he was being topped up. Yeah. 

[00:24:10] Emma Pickett: It's quite intense- It w- yeah ... syringe feeding. It's not, it's, it's a lot of syringes and a lot of, you know, w- takes time.

Takes time to pump when you're single-sided pumping, and it takes time to syringe feed. So good news that you've got this lovely support network to look after you and to help look after Nora, 'cause that's a, a really tough time in any, in any new parent's, um, story. So you go back to the hospital on Monday morning, and you meet the cleft team.

Tell us what that appointment is like. Let's imagine someone's going to, we're going to have that appointment in the next few days. What was that appointment like for you? 

[00:24:40] Alexis: It was really tough. Um, the, the team were incredibly supportive. It was just not what I was expecting at three weeks postpartum with my tiny baby.

One of the first things that they said was that, "You won't be able to breastfeed your baby. Uh, breastfeeding is not possible because he can't create a vacuum. It just won't work, essentially." 

[00:25:00] Emma Pickett: Yeah. So for anyone who doesn't know what we're talking about, obviously when a baby breastfeeds, they have to have a seal.

They have to have a vacuum to be able to create negative pressure, which then draws the milk from your breast. So lots of people imagine that breastfeeding is about squeezing the breast, and surely the baby can still squeeze and the milk will come out, and okay, yeah, some of it might go into the hole, and that's not great, but surely he'll still be able to swallow if you can just do the squeeze.

But actually, there's this very clever intraoral vacuum system that works where the baby drops the back of their tongue, negative pressure's created, it draws milk from the breast. So the tongue is doing a wave-like motion and moving in, in and out of that negative pressure state, but actually, if we don't create a vacuum in the baby's mouth, it's gonna be really, really difficult for them to transfer milk It's interesting they said you can't breastfeed.

I mean, I guess could you still do non-nutritive suckling at the breast, or is that not as, so safe because he might aspirate milk? Is that the risk that if he was directly on the breast, milk might go in the wrong place? 

[00:26:00] Alexis: No, they did, they did say, you know, like, if you want to, he can, he can, you know, calm himself on, on the breast, but he, his form of feeding won't be on the breast.

[00:26:10] Emma Pickett: So I can't imagine what it feels like, Alexis, to be a mum for whom breast- breastfeeding has been so important, to actually be told, "No, whatever you do, it's not gonna happen. Whatever you do, you cannot breastfeed this baby and, and nutritively feed the baby at your breast." That must be such a hard thing to hear.

Do you remember that moment and that conversation? 

[00:26:33] Alexis: Yeah, I was, I was devastated. 

[00:26:36] Emma Pickett: Yeah, I'm sure. I'm sure. And, and obviously that professionals have said that to people lots of times. Mm. But th- but you still f- felt in that moment that they did really connect with you emotionally, and they understood why it mattered to you.

[00:26:50] Alexis: I think to a point. I, I think, um, I think I was probably on the extreme end of the, of the scale in terms of, um, how much breastfeeding mattered to me. Yeah. Yeah. I, I don't think they were quite maybe prepared for someone to be as devastated as I was. 

[00:27:10] Emma Pickett: I mean, I don't mean to kind of be boss- sort of prying and, and trying to...

But I'm trying to paint a picture if we were a fly on the wall in that moment. 

[00:27:17] Alexis: Yeah. 

[00:27:17] Emma Pickett: I'm guessing you started crying. You- Yeah ... you were very, very emotional in that moment. 

[00:27:22] Alexis: Yeah. 

[00:27:22] Emma Pickett: And then at that point, it's presumably difficult to hear what anyone else is saying, and you're not able to absorb any more information about next steps or treatment because you're just dealing with this huge sense of loss and bereavement.

Is that right? 

[00:27:34] Alexis: Mm-hmm. Yeah. I think I felt, um, yeah, quite overwhelmed with how completely consuming that devastation was as well. Um, it almost felt confusing because I was so sad about not being able to breastfeed when shouldn't I have instead been so sad about the fact that my baby has a cleft palate?

Does that make sense? Like, it was, yeah, it was, it was a really confusing, um- A really confusing time because I was, I was completely devastated and also just totally overwhelmed about this new diagnosis that I couldn't even kind of think about because I couldn't quite wrap my head around the fact that I've got a three-week-old, and we're not gonna have that breastfeeding j- journey that I just, I couldn't imagine not having.

[00:28:29] Emma Pickett: Yeah. Yeah. Yeah. I mean, absolutely devastating. My, um, I just can't imagine how that feels. And, and you, you almost worded it then, like you almost felt slightly guilty for focusing on yourself. But you- Mm ... you weren't focusing on yourself. You were t- thinking about his loss as well. Mm. You were thinking about, you know, it was g- gonna be a loss for both of you.

It was gonna be something that might impact on his health and his relationship with you. And, um, and, you know, you were, as everyone says, at this point you're a dyad. You were absolutely interconnected. It was a loss for both of you. It wasn't just- Mm ... you thinking about yourself. So in that appointment- 

[00:29:02] Alexis: Mm

[00:29:03] Emma Pickett: were they able to give any practical information about treatment? Did you, did they, did anyone talk about surgery, or were you just not able to absorb anything else beyond that? 

[00:29:11] Alexis: Yeah. No, they did. They, they gave a lot of information. Um, I definitely kind of shut off at a point. Um, but they did. They, they talked through the surgery requirements and also how they would be supporting him throughout his childhood years, um, because the cleft team aren't involved until, you know, late teens when, um, hopefully he won't be impacted by it.

Um, he'll grow out of, out of, um, yeah, how, how 

[00:29:36] Emma Pickett: it's impacted him. Okay I'd love to tell you about my four most recent books. So we've got The Story of Jesse's Milkies, which is a picture book from two to six-year-olds that really tells the story of little Jesse and how his breastfeeding journey may come to an end in one of three different ways.

Maybe there'll be a new baby sister, maybe his mom will need to practice parent-led weaning, maybe he'll have a self-weaning ending. It's a book that helps your little people understand that there are lots of different ways breastfeeding journeys might end, that we're there to support them through all of them, and also, we sometimes have needs too.

Also on endings, we have Supporting the Transition from Breastfeeding, which is a guide to weaning that really talks through how to bring breastfeeding to a close in a way that protects your emotional connection with your child. There are also chapters on different individual situations, like weaning an older child when there's still a baby feeding, weaning in an emergency, weaning in a special needs situation.

Then we have Supporting Breastfeeding Past the First Six Months and Beyond, that's really a companion to sit alongside you as you carry on breastfeeding through babyhood and beyond. What are the common challenges, and how can we overcome them? And let's hear some stories about other people who've had a natural term breastfeeding journey.

Then we have The Breast Book, which is a puberty guide for nine to 14-year-olds. It talks about how breasts grow. It answers common questions. It talks about what breastfeeding is. I talk about bras. I really want to leave a little person feeling confident and well-informed as breasts enter their lives. So if you want to buy any of those books, I am eternally grateful.

If you want to buy one of the supporting books, you can go to the Jessica Kingsley Press website. That's uk.jkp.com. Use the code MMPE10 to get 10% off. And if you have read one of those books, and you can take a moment to do an online review, I would be incredibly grateful. It really, really makes a difference.

And as you can tell from the fact I'm making this advert, I have no publicity budget. Thank you.

So f- for anyone who doesn't know, if someone's met you on the street and said, "Oh, a cleft palate, I've never heard of that. What is that?" How does it happen that a child has a cleft palate? What do we d- do we understand what's going on? Tell us a little bit about the science behind it. 

[00:31:57] Alexis: Mm, so it is, um, essentially when, when the embryo is being, being formed, um, it's just this little, little bit in the middle that's just not connected, in the most simplest 

[00:32:09] Emma Pickett: terms.

And that's true for all embryos. So my understanding is every baby- 

[00:32:14] Alexis: Mm ... 

[00:32:14] Emma Pickett: before they become a fetus and a, become a baby baby, everyone's got a cleft, and we're, we all have that midline that needs to close- Yeah ... in pregnancy. Um, that's my understanding, and some closure doesn't happen. But we, do we, do we know why it doesn't happen for some babies?

[00:32:30] Alexis: Yeah, so there's, there's two, um, two options there. The first is that it just, it's random I think there is some, some suggestion that it's related to, like, some deficiencies, and I think it's, um, I think there's some folic acid deficiencies maybe 

[00:32:48] Emma Pickett: Yeah, I mean that's, that's why we take folic acid, isn't it?

Yeah 'Cause spina bifida is also a midline closure deficiency and, um, a midline closure issue. Um, and that's why folic acid is important. But, but you were doing all that. That wasn't an issue for Flynn. 

[00:33:00] Alexis: So the other road is that it's a genetic change, and oftentimes if, or if, in at least in New Zealand healthcare, if, um, if a baby has more than one characteristic that, um, is leading towards a genetic change, they'll offer testing.

Um, it's optional. Um, I actually, I think they do offer it just for clefts if you'd like to take, take that up. But yeah, for Flynn there was a couple of other, other signs that, um, led us to be doing genetic testing. Um, he had a wee, um, indent on his forehead, and I put that down to pushing him out for two hours, um, and him kind of being stuck.

I just thought it was related to that. But while we were in the hospital, he also got diagnosed with craniosynostosis. 

[00:33:51] Emma Pickett: So craniosynostosis, which is also an episode, is a subject of another episode which I did with the lovely Ruth, and she talked about her son Rowan, and if, if this is your story and craniosynostosis, I'm not even saying it properly- Mm

um, uh, that, go and have a look at Ruth's episode. But for anyone who doesn't know what craniosynostosis is, this is about plates, isn't it? Mm. Tell us what's happening there. 

[00:34:13] Alexis: Yeah, so, um, when, when they're in the belly they have big plates, and they shouldn't be fused because they need to be able to get out at rebirth now and also grow.

Um, so essentially what Flynn had was just one of his sutures of

his

plates was fused, and it had just fused too early. It can happen completely randomly, however, when you've got two features, um, it could also be something that's connected. 

[00:34:43] Emma Pickett: Okay. Oof. So not only do you have cleft palate treatment in your future- Yeah ... you've got craniosynostosis treatment in your future as well.

[00:34:53] Alexis: Yeah 

[00:34:54] Emma Pickett: So let's talk about the cleft first of all. Mm-hmm. What happens when a baby's diagnosed with a cleft palate at three weeks, and what's the kind of the timeline? 

[00:35:03] Alexis: Pretty much immediately they wanted to get him onto the specialized bottles, which I was very uncomfortable with. Um, obviously though, uh, syringe feeding him 70 mils every three hours was not sustainable.

Um, so I didn't really have a choice. Um, I did in that moment ask if we could look into a supplemental feeding system to at least kinda ease me into maybe trying bottles when it wasn't quite so necessary. 

[00:35:32] Emma Pickett: Okay. So you're talking about tube feeding at the breast, which presumably requires a vacuum though, Alexis, 

[00:35:38] Alexis: isn't it?

If it's with a syringe you can, you 

[00:35:40] Emma Pickett: can, yeah. Ah, so you create the positive pressure with the syringe- Yeah ... at the other end. Yeah. Okay. Thanks for clarifying that. So essentially 'cause he can't create negative pressure, you've got to create the positive pressure. So with the syringe and the tube feeding system or with the special needs feeders, Haberman feeder is one type, there's lots of others, you, you can squeeze essentially to create that positive pressure.

Um, and how d- then did you get the chance to do the syringe feeding? 

[00:36:05] Alexis: I didn't. Um, they suggested that I do it after we get him on the bottle, which in hindsight I feel quite ungrateful towards because as soon as he got the bottle it was, it was over for the breast. He, he was just not keen to go back.

[00:36:19] Emma Pickett: That's tough. 

[00:36:20] Alexis: Yeah. 

[00:36:20] Emma Pickett: So you, you not only had the diagnosis but then he was saying, "Actually, Mum, nope, don't even wanna be there". Um- Mm ... and that's that sort of sense of rejection on top of everything else, I can't imagine was easy at all. 

[00:36:30] Alexis: Yeah 

[00:36:32] Emma Pickett: So describe if someone hasn't seen one of these bottles, how do they look different from a regular bottle?

[00:36:38] Alexis: So the one that we had was a Pigeon Cleft. Um, it was essentially like a, a pretty large plastic bottle, um, with a pretty normal looking teat. The one difference is that there's a wee bobbin that sits inside the cap, which, um, is a one-way valve, so milk can go into the teat and it can't come out. So they essentially gum at the teat, and that's how milk comes out.

They don't need to make any suction. 

[00:37:08] Emma Pickett: Okay. Okay. And it's obviously that decision to start using bottles felt quite significant for you. It felt like you'd, you'd gone into a different area of feeding that didn't feel comfortable. Mm-hmm. But you're still using your own milk? Did you use formula at any point?

[00:37:24] Alexis: No, I was really, really lucky that I, I managed to keep up, um, pumping and yeah, we didn't need to use formula. 

[00:37:31] Emma Pickett: Okay. Wow. 

[00:37:32] Alexis: Yeah. 

[00:37:33] Emma Pickett: Um, did, did you get a better pump? I'm hoping in the... I hope the answer to this question is yes. 

[00:37:38] Alexis: Yeah, I did. I did. I was also really lucky. Um, the Cleft Foundation here, um, give out free pumps.

They did loan them, I think they give them now. Um, so that arrived back at our house after we got home a week, a week later, which was a really great kind of kickstart to my pumping journey. 

[00:37:57] Emma Pickett: So you've got all this information around how to feed Flynn, and you've got information around using the bottles.

And when do they start talking about surgical intervention? 

[00:38:07] Alexis: We were told that his cleft palate surgery would occur at around nine months, um, and that his cranio would need to happen at about 12. 

[00:38:17] Emma Pickett: Okay. So that's a long time until nine months- Mm ... isn't it? And b- maybe people won't understand why do you have to wait that long.

W- what's, what's the reason? 

[00:38:24] Alexis: So there's a really sweet spot, um, in their growth. Um, they want to... If they, if they do it too early, then when the baby grows, it can essentially pull back the work that's been done on the cleft and undo it, um, in a way. But if it's done too late, then it's going to affect things like speech, um, and oral function like eating, and Flynn would have quite a bit, um, of food and milk come out through his nose, um, because there's essentially a doorway.

[00:38:57] Emma Pickett: Yeah. 

[00:38:57] Alexis: Yeah. 

[00:38:57] Emma Pickett: Yeah. So here you are, baby is a month old, and you know you've got eight months of this bottle feeding, pumping. That's a long road- Mm ... ahead of you. 

[00:39:09] Alexis: Yeah. 

[00:39:09] Emma Pickett: That's, that is tough. Um, do you get ongoing support from, from the cleft team? What's the kind of ongoing relationship like? Um, we 

got 

[00:39:15] Alexis: cleft-related support.

Um, there's no lactation

consultant within the team. Um, but I, I was being helped by the lactation consultant that I initially saw. Um, she's wonderful. And I still see her now too. I'm really lucky to have her in our team. Um, but yeah, other, other than that, it was, um, it was kind of go home and, um, yeah, do it as normal. I was, I think we came in every few weeks to see the pediatrician.

Um, oh, and also we had an outreach nurse coming to us to do ways as well, which was, which was great. Um, we had an SLT as well that was, that was really helpful in those early days, just kind of unpacking and explaining everything. Um, yeah, and helping with the bottles as well. 

[00:40:05] Emma Pickett: So eight months of exclusive pumping, Alexis- Yeah

is very, very tough. And tough for anybody, let alone somebody who, you know, has to use bottles that are a bit fiddlier and a bit different, and you also have got the craniosynostosis stuff going on as well Did that impact on his feeding? Was he more comfortable on one side than the other? Did you notice any issues with, with his sort of physiology?

Was he doing a head turning? 

[00:40:30] Alexis: Uh, we didn't notice any, any, um, obvious changes. I do wonder how that impacted his comfort attempting to breastfeed as well, um, 'cause he, yeah. Well, we were also taking him to see an osteo who's a, who's a, a close family friend as well, who was incredibly helpful, um, just kind of helping make him more comfortable 'cause yeah, it wasn't, it wasn't an obvious aside from the way that his head was kind of twisting a little bit.

There was no, um, no other clear symptoms that were related, but I do think it increased kind of the tension throughout his body as well. 

[00:41:07] Emma Pickett: Yeah, that would make sense. Mm. So you're still pumping every three hours throughout this whole time, or did you get into kind a different pumping pattern? 

[00:41:13] Alexis: I got into a different pumping pattern, and I also, um, I kind of threw myself into educating myself on how to pump.

Yeah, so it, it was, it was about a year, um, that I was exclusively pumping for, and throughout that time I was still adamant that we were gonna breastfeed. Um. 

[00:41:32] Emma Pickett: Okay. So that's the question I was gonna ask next. Mm-hmm. So you were thinking, "This surgery is gonna happen when he's nine months old-" Mm ... "and Flynn will be breastfeeding after that surgery."

That, in your head, that was absolutely how it was gonna go. No question. Yeah. So you had that really, really strong motivation to keep your supply going and to, to keep up with that, with that pr- that process of exclusive pumping. Mm. And then tell us about the surgery, your experience of having the surgery.

[00:41:57] Alexis: Yeah. So in the end he actually had to have the craniosynostosis surgery, um, done sooner. So that was, um- Okay ... yeah, that came in at, uh, it was in September, so he was six months, seven months. Yeah Um, and that pushed back his cleft as well, 'cause he needed to have about three months between for recovery time.

[00:42:18] Emma Pickett: Okay. Ah, that must have been so frustrating for you when breastfeeding was so important. 

[00:42:22] Alexis: Yeah, yeah. It was, it was, it was tough, especially 'cause we didn't get a surgery date until I think we were three weeks out that we got a date, so I was kinda hanging out to have an endpoint. Um, but yeah, throughout that year as well, I was still maintaining association with the breast.

He wasn't super keen, but I would just put, uh, the tube there with the, with the syringe and just kind of maintain that association that this is where milk comes from. And there were days where he would latch on a little bit, be a little bit interested, other days where he just wasn't keen at all. But, um, I think that that really helped.

[00:42:56] Emma Pickett: Yeah, for sure. 

[00:42:56] Alexis: Yeah. 

[00:42:57] Emma Pickett: Yeah. So the craniosynostosis surgery is, is essentially stopping those foot plates being fused. You're opening up those plates, are you? Mm. And then putting in a... I mean, Ruth described, you know, the little thing you have to twist. You were doing all the twisty 

[00:43:12] Alexis: thing. No. So we didn't, we didn't have that luckily.

Um, we had, it was the, the unfusing of the plate, and he also has, um, underneath his forehead just a wee implant that is dissolvable, so it'll go away in about two years. Um, but we're one and done, thank goodness. 

[00:43:29] Emma Pickett: Okay. So then you get the call to say, "Okay, cleft surgery's happening", and it must be so difficult to kind of balance the hope with not giving yourself too much hope just in case it doesn't work out.

Or were you still absolutely, "No, it's gonna happen. We're gonna get there"? 

[00:43:44] Alexis: Um, I think I was on the outside very confident, um, and on the inside just trying to kind of maintain sanity in, in a way. Yeah. I, I knew that there was, you know, the... I was also accepting that if it didn't happen, it didn't happen. But als- yeah, I was really hopeful that it would.

[00:44:04] Emma Pickett: So he goes in for the surgery, and very daft question, but they just stitch together the little s- the sides of the V like you're stitching a cut? How does it hap- How does it work? 

[00:44:15] Alexis: There's a new method that the surgeon, uh, told us about that they actually remove some of the buccal fat from the side of the mouth, um, to add that as, as essentially padding after they've stitched it to increase the chance of healing being successful, 'cause at, at times upon healing, they can sometimes form little holes.

Um, but yeah- Okay ... making the surgery slightly more intensive, um, and doing the buccal fat, um, increases, yeah, the rate of healing, so. 

[00:44:46] Emma Pickett: Okay, that's interesting. So they take some of his own cheek cells and place it in that, in the area where the, the, you know, this detachment- Mm ... is gonna happen. Um, and that increases acceptance and inc- means, means that the, the wound will be more intact.

Um, so he's, I mean, it's horrible for anyone to, to see their, you know, one-year-old go through surgery, or at that point, slightly under one. Mm. Um, I mean, that's a rough experience for anybody to go through. How long was he in the surgery for? 

[00:45:14] Alexis: For the cleft, he was in for, I think it was two hours. Um, he also had grommets put in at the same time.

That's another factor of, of clefts, is that they oftentimes kids will have hearing difficulties, um, because they don't have that muscle that's functioning to create suction. The Eustachian tubes can't drain in the same way that, um, um, non-cleft kids do. Um, so Flynn also had some hearing loss, which was another factor as to why I was wanting him to breastfeed again, because that would increase the use of that muscle, and therefore hopefully- Yeah

assist with his hearing as well long term. 

[00:45:53] Emma Pickett: And reduce risk of ear infections as well, which presumably is a greater, greater risk. Um, so he comes out of the surgery, and how soon after that are you able to have a go at breastfeeding? We 

[00:46:04] Alexis: had to wait six weeks, which was- Six 

[00:46:06] Emma Pickett: weeks ... I, yes. Oof, that's a long time.

Yeah. So you couldn't even do any of the kind of giving him a go on the breast thing for six weeks. You had to even stop all that that you were doing before with the tube and the 

[00:46:17] Alexis: syringe. Yeah, so we were told no, no offering the breast at all. Um, when we got to a month, and I was doing a ton of research and seeing that other guidelines sugge- other, you know, suggested a month over six weeks, and I thought, "He's not gonna just get on and, and make suction.

Like, there's no way." So at that point, I just started to kind of put him near it and had the, had the, had the tube kind of running to, so that he could see, you know, to maintain some association, 'cause after a month- Okay, 

[00:46:47] Emma Pickett: an 

[00:46:48] Alexis: association Yeah. Um- 

[00:46:50] Emma Pickett: I wonder why you have that requirement to do s- uh, delay of up to six weeks.

Mm. I mean, presumably you're still bottle-feeding him during this time, so- 

[00:46:58] Alexis: Yeah, but there's no suction 

[00:47:00] Emma Pickett: There's zero... So it's the suction that's the problem because the suction might pull apart the, the surgery. Mm. Okay. Okay. So you get to a month. You think, "Okay, maybe we're getting to the time when we can have a go."

Tell us about those, those early attempts back on the breast. 

[00:47:15] Alexis: Yeah, not interested. It was, it was... Yep, it was, um, he kinda looked at it, lapped at it a little bit some days, and that was s- that was a successful, um, that was a successful stint I would consider. Um, but yeah, other days just, just not at all interested.

[00:47:31] Emma Pickett: And had you been waiting for a kind of da, da, da, da? Oh, completely. He's back on, it's... And you, and you thought there'd be kind of like complete epiphany. So did you feel a second sense of loss, a second sense of, um, "Oh no, this is maybe not gonna happen in the way I thought it was gonna happen"? 

[00:47:44] Alexis: I, yeah, in a way I definitely did.

Um, in another way, though, I had had so many people telling me that it's, it's not gonna happen, um, that I... The way that I, I, I kind of phrased it to myself was, because everyone kept saying, you know, breastfeeding is innate. Um, once they, once baby's turned about four months, I think is it, they, they lose their innate ability.

[00:48:08] Emma Pickett: Talking about the sucking reflex. Yeah. Yeah, I mean, they lose the sucking reflex at that point, so there's n- there's not the reflex there, so I can understand kinda what they mean. But as, as we both know, older babies can start breastfeeding. Um, um, and I even w- at one conference actually once heard a, a woman talking who had adopted a baby at 18 months, and that baby had had no experience of breastfeeding, and with, with lots of effort she actually got that toddler to breastfeed.

So it's, uh, any age is possible. Um, so people were telling you, "Don't get your hopes up. Probably not gonna happen. He doesn't have that innate skill anymore." 

[00:48:42] Alexis: Yeah, yeah. I, the way that I saw it was he's really frustrated because this is something he doesn't know how to do. How can I teach him? How can we kind of learn together?

Um, and yeah, I, the other, other thing that I think really, really helped us was that I had him in the carrier all the time. I always wear him, so he's kind of right, when he's on my front, he's right at the boob. Um, so that made a real difference, um, 'cause I would just kind of put, connect the two. But sometimes I'd use a nipple shield as well, um, and that would, that tended to be even more successful 'cause he was used to that silicone kind of tactile feeling.

And yeah, some days he would latch on, other days he wouldn't. I would oftentimes put music on to try to distract him a little bit. Um, and in those days I was, I was limiting it to, like, two to three tries a day 'cause it was just too emotionally taxing when he would just refuse it. Um- 

[00:49:41] Emma Pickett: Yeah, wow. 

[00:49:41] Alexis: Yeah, and alongside pumping as well, it was- 

[00:49:44] Emma Pickett: Yeah, so you've got, you've got to help a little baby recover from surgery for the second time, and you've got to keep up your supply and your pumping, and you've got to feed him, and you've got to fit in attempts at breastfeeding.

[00:49:55] Alexis: Mm-hmm. 

[00:49:56] Emma Pickett: That's a full day, Alexis. How, how on earth are you managing all that? And you're looking after Nora as well. How are you managing all that? 

[00:50:03] Alexis: Uh, lots of coffee. I think I knew it was temporary, so it was, yeah, I, I'm so incredibly g- grateful for my support system as well. My husband, I couldn't have done it without him.

Um, my mum as well. Just so lucky for the people that I have around me kind of supporting me, 'cause I, I did, I had... It was really tough. Um, yeah, I think the other, other thing that we had on our side too was that, um, we found his cleft palate surgery to be so much easier than his, um, craniosynostosis surgery.

Um, so having him that way around was a lot more manageable 

[00:50:45] Emma Pickett: Okay, that's interesting. So not that we'd wish m- more serious surgery on anybody- No ... but actually in a way that meant that for you the cleft surgery was kind of e- an easier experience. You'd almost kind of be been pre-traumat I guess, which is probably not a word I should use.

Um- No, it's all right So you carried on, you, you carried on with the babywearing, you carried on using the syringe, you carried on using the tube. Did things start to get easier? We haven't gi- we haven't given away yet what's gonna happen at the end of this journey. What's gonna be continuing to happen.

How did breastfeeding end up developing? 

[00:51:16] Alexis: Yeah, it was j- it was very, very, very slow. Um, it would just be one day he would, he latched for like 15 seconds, and that was amazing. Um, and then he would refuse for the next three days, and then the next day he would latch for 30 seconds twice in the day, and then refuse again.

So it was very slow. Um, and this was all with the syringe as well, and oftentimes the nipple shield as well. Um, I was kind of filling up the 20 mil syringe and quickly filling it back up again when he'd, he'd go through. It was, it was pretty messy. Um, yeah, and then one day it was just, it just got better, and it got better.

Um- Yeah. And eventually he started to actually suck the milk out, um, and I didn't have to kind of, I could slowly push out the syringe, and I remember the feeling when he actually got a letdown, um, was insane. Um- 

[00:52:17] Emma Pickett: Yeah, I can see a big smile on your face. So, so that moment when that happened, you felt him create that negative pressure, you felt him actually draw milk himself.

[00:52:24] Alexis: Yeah. 

[00:52:25] Emma Pickett: That must have felt, felt amazing for the first time in, in almost a year. That must have felt fantastic. 

[00:52:30] Alexis: Yeah. He got a 

[00:52:31] Emma Pickett: bit of a bribe. Do you, do you remember where you were when he, what he did? Do you, do you remember where you were when that happened? 

[00:52:36] Alexis: Yeah, I think I was right... I was just in my kitchen, right here.

Um, yeah, yeah, it was awesome. It felt like, yeah, all that hard work was, was worth it. 

[00:52:47] Emma Pickett: Oh, and did you manage to not go, "Yay", and freak him out as well? How did you cope? You were doing all that internally, I'm guessing. 

[00:52:54] Alexis: All internally, yep, yep. Yep. He did, after that he, he did, um, refuse it for the next couple of days as well, so it was, it was definitely kind of three steps forward, two steps back.

But yeah, it was, yeah, it was a rhythm. 

[00:53:10] Emma Pickett: Yeah. And, and what's the situation today? So how old is he right now? How long ago is it since your surgery? What does a typical 24 hours look like right now? 

[00:53:19] Alexis: He is 14 months now, um, and he is fully breastfed. Yay. Yeah, yeah. I, um, I pumped for the last time, think it was three weeks ago, which feels insane to say.

Um, but yeah, he, um, he's fully, fully adapted to, to being breastfed, and I'm still using a nipple shield, um, which is fine 'cause he has teeth and it makes it a lot more comfortable, um, at the moment. But yeah, he, he drinks a, a little bit during the day. He's not super, not super bothered most of the time. Um, but overnight he's, he's- It's quite hard to give up.

[00:54:05] Emma Pickett: Yeah. Oh, fantastic. This is the one time where 14-month-olds who reverse cycle, we'll take it because that's, that's great news. So you're not pumping. Mm-hmm. You're not using the syringe and the tube anymore. Mm-hmm. Um, he's directly feeding from you. He's obviously getting a letdown and swallowing, and that's fantastic.

What an achievement. Wow, Alexis, that, you must be so proud of, of where you've got to. Yeah. Talk about determination. This is an example of someone who was absolutely determined to make something work, and your patience is what's really striking me. You were, you were so patient. You were saying, "Okay, two more days of him not latching, but I'm hopeful that we'll come round again."

Whereas lots of other people would've been like, "No, I can't handle this emotional rollercoaster. It's too much." But you had that, that patience to keep going, which is f- absolutely amazing. Um, what an achievement. So when did you last use the tube and the, and the syringe? 

[00:55:00] Alexis: Um, it would've been about a month and a bit ago.

I stayed pumping for a little bit longer just to, um, because he wasn't transferring heaps, I wanted to maintain my supply, and also it was pretty uncomfortable too, 'cause I think I was, I was pumping more than he needed. But yeah, no, it was, it was a pretty quick transition away from the tube and the, and the syringe.

[00:55:22] Emma Pickett: Yeah. Fantastic, and there's no l- lasting issues with his latching. That's all good. There's nothing else that's kind of carrying on, that being an issue that's, y- it's comfortable for you. You can hear him transferring. It sounds like it's effective. What's happening with the kind of cleft team in terms of follow-up?

D- w- is there anything that happens next? 

[00:55:41] Alexis: There's not much now. Um, we, yeah, we just have to monitor him for his speech. Um, and he, his hearing, we, we have to, um, check in with that. His, um, one of the grommets actually fell out, so I'm really hoping to have some good news that, that, um, we don't need to put any back in.

Um, hopefully his hearing's improved. For anyone who doesn't know what 

[00:56:01] Emma Pickett: a grommet 

[00:56:03] Alexis: is- Mm ... 

[00:56:04] Emma Pickett: tell us what, what a grommet is. Um, it's a 

[00:56:06] Alexis: teeny tiny little tube that goes right into the ear, um, and through the, oh God, what's it called? Um, into the ear canal, um, and it lets out pressure. 

[00:56:18] Emma Pickett: So it's, so it's essentially the eardrum- 

[00:56:20] Alexis: Yeah

[00:56:20] Emma Pickett: is being perforated on purpose to allow fluid to come out. Is that how you would describe it? 

[00:56:26] Alexis: Yes. Yes, 

[00:56:27] Emma Pickett: that's much more eloquently . And that, allows the fluid to 

[00:56:28] Alexis: drain. Yeah. 

[00:56:29] Emma Pickett: No, no, no. I'm, I'm, I might be wrong, so correct, correct me- No, that's, that's right ... that's my understanding. Okay. And then obviously if it fell out, it may be that, do eardrums heal themselves?

So can they come back together again? I- Yeah ... presume they can. 

[00:56:41] Alexis: They, they, they do. Um, Flynn's ears were re- are really tiny, so it was quite hard to, for the surgeon to get the grommets in. Um, so we'd be looking at potentially hearing aids as well as another option. But hopefully the breastfeeding is just really helping Is the, is the goal 

[00:56:57] Emma Pickett: Yeah.

Yeah. Well, it definitely will be on so many levels. Gosh, what a story, Alexis. You are amazing. Um, and what would you like to happen with his feeding journey? In the same way I'm guessing that Nora t- naturally came to an end, is that what you're hoping will eventually happen with Flynn? 

[00:57:13] Alexis: Yeah. I think just on his own time is, is the goal.

Um, yeah, such a, such a mountain to climb getting there. Um, I'm in no, um, no hurry to, yeah, to think about weaning even. It's just, it's just it'll happen when it happens. 

[00:57:30] Emma Pickett: Yeah, I mean, it's not long since. I mean, you've only been breastfeeding for, you know, in the way you have for a- Yeah ... coup- you know, a month or so.

Yeah. So there's certainly no way you're gonna be ... Well, you're the last person who'll be night weaning a 14-month-old 'cause you're s- must be, you must be so grateful when he's actually feeding the way he is. Yeah. Um, so when's the last time he kind of rejected the breast, in inverted commas, and said, "No. No, thank you"?

[00:57:49] Alexis: Yeah. No, it's, it's been probably a month now. 

[00:57:53] Emma Pickett: He's in. He's, he's signed up. He's locked 

[00:57:54] Alexis: in. 

[00:57:55] Emma Pickett: He's a, he's a badge-wearing booby monster. He's locked in, yeah. Fantastic. What an achievement. Thank you so much for sharing your story, Alexis. And yeah, we kind of, we went chronologically, so to kind of cut, held, hold back on the ending and, um, you know, what a treat it is to get here and hear how all your hard work has paid off.

So you've talked about lots of teams helping you, and lots of different people in your story. Are there any kind of resources that you really found helpful and you really connected with? Anything you'd want to recommend anyone else who's in this, in this journey? 

[00:58:25] Alexis: Um, in terms of, um, getting back to the breast?

[00:58:29] Emma Pickett: Yeah. Any, any part of your story, whether it's something about a cleft or something about, again, coming back to the breast. Anything that really connected with you. 

[00:58:36] Alexis: I think the toughest thing is, is that I, I did feel quite isolated in my journey to getting back to the breast. I, I really, um, struggled to find that many resources.

[00:58:46] Emma Pickett: Yeah. I was gonna say, I was, I'm think- trying to think of anything I could ... There isn't anyone who's got a story exactly like yours. Yeah. Um, so you, you know, you are kind of on your own in lots of ways. So, um, if someone does listen to this and, and feels a sense of being less isolated, that is obviously a huge- Mm

huge gift. And I don't want to make you a one-woman support network, but obviously if they want to reach out and have they got any specific questions- Yeah ... um, I can, I can conne- I can connect people with you Yeah, so the cl- so there's a charity in New Zealand for cleft babies and, and families. 

[00:59:19] Alexis: Mm-hmm. 

[00:59:20] Emma Pickett: Um, and then there's obviously CLAPA in the UK, and I'll, I'll put that in the show notes.

[00:59:24] Alexis: Yeah, there was one Facebook group actually, which was the only, only group that I found that really kind of aligned with what I was looking for, which was, is a UK-based group. Um, I think it's the, uh... Hang on. I can find out actually, 'cause I've got it written down. 

[00:59:36] Emma Pickett: You send me the link, and we'll put, we'll put that in the show notes as well.

Awesome. Um, okay. Thank you so much for your time today. I am so grateful, and, and so in awe of you. You are amazing. What a determination, and, and also just, you know, a breastfeeding advocate for the ages. Yeah. Um, and you absolute, absolutely deserve to have the ending that you had. And, um, little Flynn is out there sleeping away- Yeah

as we have this call, and has no idea of all the effort that you've put in. So Flynn, if you're ever listening to this episode, I'm imagining you as a teenager Googling and listening to Mummy on this podcast. You must be so proud of your mummy, 'cause she worked so hard to be able to breastfeed you, and what a lucky little boy you have, you are to have mum, the mummy that you have.

Um, and he's like, "Oh, what? How embarrassing. Oh my God. Stop." What does she do? If, if you got this far, I'll be impressed, 'cause most teenagers won't get, wouldn't get this far. Um, but, but what a determined mummy you have, and, um, yeah. And, and three cheers for George and all his support as well. Yeah. Thanks for your time today, Alexis.

I really appreciate it. 

[01:00:38] Alexis: Thanks so much.

[01:00:44] Emma Pickett: Thank you for joining me today. You can find me on Instagram at emmapickettibclc and on Twitter at makesmilk. 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.