Ruth's story - breastfeeding with craniosynostosis

This week, I’m talking to Ruth from Lincolnshire about her experiences breastfeeding her son Rowan, who was diagnosed with craniosynostosis - a condition in which a baby's skull bones fuse too early, leading to an unusually shaped head and potential brain issues. Ruth established breastfeeding despite Rowan's early medical challenges, including a NICU stay with a collapsed lung, and has continued to feed him through the use of a cranial distractor to treat his craniosynostosis. Rowan is now a happy 20 month old, a booby monster and awaiting his next surgery. 

My new 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, that's uk.jkp.com using the code MMPE10 at checkout.

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

Ruth mentioned her support from Jayne Cozens IBCLC during our conversation https://www.natusanarelactationandholisticservices.com/about-me 

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 am 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. I'm gonna be talking to Ruth, who is from Lincolnshire, and Ruth is the mother of the lovely Rowan. Um, I've been lucky enough to see a couple of pictures of him, so not that there's any child who's not lovely, but he is particularly lovely and smiley and gorgeous.

And as you'll have seen from the title, we're gonna be talking about Ruth's experiences of breastfeeding Rowan through medical diagnosis and treatment. And some of the things we're talking about will be tough, but I'm also hoping that we're gonna connect with people who support families. And also connect with people who may be going through some of this themselves.

Thank you very much for joining me today, Ruth. I really appreciate it. 

[00:01:22] Ruth: Thank you for having me. 

[00:01:23] Emma Pickett: So let's start at the end. Tell us about Rowan. How old is he? What's he into? 

[00:01:31] Ruth: So Rowan's now 20 months old. He is a happy, smiley, cheerful toddler. Loves books of hours on NT, will read books. You can sit there for hours with him.

Runs off very cheeky, very happy go lucky toddler. Really wouldn't really say there was anything particularly different to any other toddlers about him. 

[00:01:56] Emma Pickett: And he's got this particular medical diagnosis at the moment, and I'm really bad at saying long medical words that anyone who listens to the podcast will know.

So I was going to be saying craniosynostosis. Is that Yeah. Can you say it for me? 

[00:02:11] Ruth: So it say it more confidently? Uh, craniosynostosis. So it's a condition where the plate's in a baby's skull, so they're born with multiple plates all over the place and the plates fuse early. So they usually, uh, fuse around two, three years old, um, after a lot of growings happen really rapidly after birth.

Um, so it's where one or multiple of these plates fuse together, sometimes before birth, sometimes very quickly after birth. So there's lots of common ones that happen. So the big seams across the head and down the forehead and down the back. Rowan actually had a really different one, really one that doesn't really, um, happen very often, so it's not very common.

It's sort of the seam between the eye and the ear, sort of where it meets the lower, um, sorry, the cheek bone. So around here, and it looked like what they call a uni coronal. So the seam from sort of the crown of the head down to the ear and it held one side of his forehead back. So he had a very normal looking forehead on one side and then on the other it was really recessed back and his eye was like in front of his forehead and his forehead.

So when you looked at him, his eye went. Back and then his forehead was back there. Right. Okay. So they spent some time uming and ing about what it was. Is it uni coronal? Is it, um, so I think they've decided it's, I think it's pronounced Sid, Sid Suture around there somewhere. Okay. Um. 

[00:03:50] Emma Pickett: So, so the bits that normally would stay open mm-hmm.

And allow some sort of flexibility and growth and movement sort of fused together and, and meant that when his brain grew and the other parts of him grew that bit, couldn't, couldn't grow and expand. Yeah. And that was holding him back a little bit. Um, okay. So I'm gonna ask you in a minute about the kinda history of how you went through all the diagnosis and everything, and I really appreciate you sharing your story today.

But let's start with his breastfeeding. What's a, what's a typical 24 hours like right now with his breastfeeding, 

[00:04:18] Ruth: uh, constant, he is a absolute booby monster, as they say he will be, if I sit down, he wants milk. He's very confident signing milk and grabbing my top. Now, we still co-sleep through the night for that sort of feeding through the night that he does at least three or four times.

[00:04:38] Emma Pickett: Okay. And you, and you are breastfeeding responsively, so you're pretty much going with the flow at the moment. Yeah, I 

[00:04:43] Ruth: don't. Offer it. He comes and gets it when he wants it to be fair to him. 

[00:04:48] Emma Pickett: And, and it's, what's lovely is that you described him so positively and you know, happy and jolly and all his needs being met.

You might meet somebody else who's got breastfeeding patterns as you describe thinking, oh, he's so needy and I'm so overwhelmed and I. I can't cope with this and this is too much. And that could be someone else's reaction, which obviously is completely valid for them. But you've got this very sunny feeling around, uh, your connection with him and your breastfeeding journey.

Was it something you always wanted to do, breastfeed beyond babyhood? What were your plans? 

[00:05:18] Ruth: Um, yeah, I think so. I, I myself am a very sort of scientific person. I like to just. Get all, I get an anxious person as well. Like what calms my anxieties, knowing the facts is like the guidance and the recommendations and all those kind of things.

So with, um, the World Health Organization saying too, I was like, well, I'll do to two then and see what happens. Like if that's what's recommended, I'll go from there. So I, 

[00:05:44] Emma Pickett: so I'm gonna, I'm gonna raise my little hand here and say, I'm sure you know, this two and beyond, two and beyond is beyond is what the World Health Organization say.

[00:05:51] Ruth: So I think my plan is to, and then see what happens. I definitely. Yeah, it's the out and about ness at the moment that goes for me. I'm not sure I will get as comfortable as I am now. When that starts to happen and 

[00:06:05] Emma Pickett: Okay. 

[00:06:06] Ruth: So we'll just go from there Is my plan. Yeah. 

[00:06:08] Emma Pickett: I mean, you can make changes if you want to.

Absolutely. I literally was having a conversation with someone yesterday who is happy to breastfeed at three, nearly four, but wasn't feeling great about breastfeeding out and about just because we live in the society. We do. And that's, so, that's a change that she's going to make. It doesn't mean she's ending breastfeeding, doesn't mean it's gonna end overnight and other times it works.

She's just making adjustments and you can review when you want to. Sounds like he's not close to self weaning, if you don't mind me saying he's not close to self. When two rolls around very soon he's gonna be mm-hmm. Possibly still raring to go. So yeah, I think you've got the right approach to see what feels right at the time.

Okay. So let's start at the very beginning. That sounds like I'm about to break into the sound of music here. A very good place to start. Um, tell me about your pregnancy. Tell me about, um, Roman's birth. 

[00:06:53] Ruth: So, I'm a, a larger lady. I had a high BMI, um, when I was pregnant. So I was put for growth scans quite early, so around, I think it must have been about 31 weeks, 30 weeks, somewhere around there.

I had a growth scan that came up that Rowan was really little, he was quite, um, small gestational age. They put it on the sort of thing they had like the third, fourth centile for what they'd deemed his gestation to be. Um, so then they continued scanning us every fortnight to sort of measure that gestational growth and stuff.

[00:07:28] Emma Pickett: Gosh, scanning every fortnight. That's, that's a bit stressful. How far away were you from the hospital where the scans had to happen? About 

[00:07:34] Ruth: half an hour. 

[00:07:35] Emma Pickett: Okay. And was your employer, were you working, was your employer okay about that? Yeah, my 

[00:07:39] Ruth: employer was great with it. Um, really helpful. Um, and where I worked was only like 10 minutes from where I was getting scans.

So if I was in work it was sort of like a 45 minutes out from the job and they were fine with that. That's not a problem. And I could schedule everything that I needed to around it. So every fortnight that was scan us and every time it was sort of slowly creeping down. So it would go from like third 0.8 percentile to third 0.1 percentile, then bits and bobs, and then it got down to, I think it was like the second centile, uh, around 37 weeks.

Yeah, it was 37 weeks. 'cause then they were sort of very keen to induce me. Sort of said, we think what's happening in Jola center's not working as it's supposed to. So he's not growing as he's supposed to. I was a little hesitant for an induction. I sort of didn't want to do it. I didn't think it was, he'd always been small in my head.

So why is now any different? Surely we should leave him to cook a bit longer. 

[00:08:43] Emma Pickett: Yeah. 

[00:08:44] Ruth: So I initially declined the induction and then went off, thought about it a few hours, spoke to some people and some my parents and things, and decided, okay, look, he is 37 weeks, so he is technically for fully term, so went for the induction, um, was induced, labored delivered him, and he was little.

He came out at six pounds and half an ounce. 

[00:09:07] Emma Pickett: Mm-hmm. 

[00:09:08] Ruth: Um, but not. As little as they thought they were gonna be. I think they thought it was G from what they predicted was gonna be more on the middle, five pounds sort of size. 

[00:09:19] Emma Pickett: And what were the early breastfeeds like? Do you remember that first feed? 

[00:09:22] Ruth: Yeah. So as soon as he was delivered, they put him on me for some skin to skin.

And I remember trying to latch him and he sort of did latch. He did want to do all that, but I remember being painful and thinking it's not quite right. I'll take him off, but I don't really, I didn't really worry at all at that point because I knew, um, from my antenatal classes, like they're all right for a little while without feeding.

And I'd expressed some colostrum and had that, and I expressed some more colostrum into a syringe not long after he was born, and then just started giving it to him from a syringe. I kept trying, was painful, took him off, kept trying, was painful, took him off, spoke to some of the support workers on the ward and midwives and things, and just kept trying.

[00:10:11] Emma Pickett: But you weren't comfortable. Whatever was happening. He wasn't, he wasn't getting comfortable. No, 

[00:10:14] Ruth: it was never comfortable. And my, um, nipple would always come at me shape very sort of lipstick or crushed. Just flat. 

[00:10:23] Emma Pickett: Okay. 

[00:10:23] Ruth: Not lipstick either, but yeah, it was, I knew it wasn't Right. 

[00:10:28] Emma Pickett: And when were you able to get some.

Qualified support, some not that the people you were speaking to right now weren't qualified, but were you, when were you able to get some answers about what was happening and, and when did you actually start to get some comfort when you were breastfeeding 

[00:10:42] Ruth: qualified supports? I. Paid privately for that when Rome was about four or five months old.

[00:10:48] Emma Pickett: Gosh, that's a long time off. So I'm guessing the support that was available locally was at that kind of peer support kind of level, which should, is the bedrock of breastfeeding support in the uk. But there should be a specialist pathway for everybody and you certainly shouldn't have to pay for it. Yeah.

Um, and it's kind of infuriating to hear that it took that long. So you were, you were in pain for those first four or five months. 

[00:11:11] Ruth: So not long after Rome was born, he always sounded really gruffly in his nose and they did the newborn exam and passed an N tube and said, no, it's fine. It's not blocked, it's fine.

Always sounded a bit mucusy and snuffly. And then about, uh, was born at about four in the morning and about nine o'clock in that evening, eight, nine o'clock, he wasn't right. And one of the healthcare s. It was my first. I didn't really notice, and I still feel a lot of guilt for this, but, um, one of the support workers like this baby isn't right.

He shouldn't, it shouldn't sound like this. Um, they called one of the doctors and his oxygen was in the sixties. It was really poorly. 

[00:11:52] Emma Pickett: Oh gosh. I'm so sorry. Ruth. It, it's interesting you say that you feel guilty about that. I dunno how you would expect yourself to have known. I know nobody's, you can't de detect.

I mean, some babies are snuffly. I mean, if you've never been around lots of babies, how would you know that was abnormal? 

[00:12:08] Ruth: In the first few hours? They were like, oh, it's snuffly. Yeah, it's from the birth. Breathe it down or sneeze out or something like that. So I suppose I was good on what they were saying as well, but he got whisk up to the NICU and we, and then he was knee by mouth for a little while, so I continued to express.

Um, and then it took about three or four days. Um, he had a lot of food via NG tube. 

[00:12:34] Emma Pickett: Can I just pause you for a second there? I'm just imagining that moment of someone saying he's really unwell, we need to go to nicu. That must have been horrible. Was was, was there somebody with you? Yeah, 

[00:12:44] Ruth: my partner. Yeah, his dad.

We were all together at that point. Yeah. I just remember bawling my eyes out and walking through this ward as they wheeled my baby at a incubator forwards. 

[00:12:56] Emma Pickett: And when you arrived at nicu, what were those first few moments like? There were, you were pro, you were received by staff who were obviously trying to comfort you and, and also look after him at the same time.

How, how would that, how were those first few moments in that, in that area of the hospital, like for you? 

[00:13:10] Ruth: Um, quite overwhelming. I think. God, I'm trying to reflect back on it now. It's a lot, isn't it? Quite overwhelming. I remember just, um, as a NICU ward, you're allowed parents there all day, every day. You could turn up at three in the morning, go and sit with your baby.

And maybe it was like nine o'clock at night and there were parents sat there in the high dependency area of the NICU that RO went to. It was like at the back end of the ward, so you'd come in and walk past sort of the nursing station, lots of incubators down each side with parents, sat there and you are new and just trying to work out what's going on with your baby.

I remember everyone being lovely, really comforting, really kind. Explaining everything, talking things through, making sure we knew what was going on. I think we were there till about 10, half 10. I'd been awake for about three days at this point with laboring and in induction and things like that. And so had my partner.

Um, so where I was, the NICU was, uh, a couple floors above the postnatal ward. And I'd been on some medication while I was pregnant, which meant I needed to stay on the ward a day or two after delivery. So I went back downstairs and I remember setting myself an alarm for every three hours to express. 

[00:14:30] Emma Pickett: Okay, so you were getting the right information around.

Yeah. Protecting your breastfeeding. It must have felt awful to think, oh my God, I've been breastfeeding. I'm, you know, maybe I'm gonna get the answers to getting it sorted. And then suddenly you can't breastfeed anymore. You're not able to breastfeed and, and, you know, all your energy now got to go into expressing, but it's actually great to hear that you did some antenatal expressing and, and you'd done the colostrum harvesting.

So you'd, this wasn't alien to you. You'd done a bit of things around this already. No, I 

[00:14:55] Ruth: done, I've done some of those and I knew like continue expressing and. So after a little while, they were like, you need to stop pumping now because your, your milk will come in and you won't be able to hand express as much as you, not as much as you need to, but it'll be more effective to pump, um, than hand express.

So they loaned us the, um, hospital grade pumps. So I had one on the NICU that I could use while I was sat next to him. By co side. Okay. 

[00:15:26] Emma Pickett: I'm just gonna ask you for help. I don't think I understand the wording of that sentence. So you were hand expressing and someone said to you, let's now move into pumping.

Is that, is that what happened? 

[00:15:36] Ruth: Yeah, pretty much. Yeah. Okay. Hand expressing into like colostrum, syringes, and then the volume was gonna increase. I needed to increase my volume. 

[00:15:47] Emma Pickett: Okay. Forehand. So they were, so, they were advising you to move into the pumping. So all the, all the advice you're getting sounds really positive.

Were you getting answers around. What had happened with his breathing and is it connected to his later diagnosis? Is there something about bony structures? And I don't think they really know. Um, so it wasn't an infection. He didn't have a respiratory infection or anything? 

[00:16:07] Ruth: No, I think so there's two diagnosis that sit with Rowan.

He also has something called piriform apertures stenosis, and that's another big, long one, which is basically the holes for his nostrils are narrower than they should be. Okay. But only sort of marginally. So I think they, when he was um, given a CT scan, they should have been like eight millimeters and his was sort seven.

[00:16:30] Emma Pickett: Gosh, that does feel marginal. I, this shows how, my ignorance, that sounds pretty much eight millimeters, but, but they're saying that's enough that if there's a bit of, if there's a bit of goo up there, he's not gonna be able to cope with it. And that's why his oxygen levels are dropping. Yeah. So I 

[00:16:43] Ruth: think we think he had such sort of narrow nostrils that he was trying to breathe.

Babies don't learn to mouth breathe until they're about one Typically. So he was trying to breathe through his nose. He had really narrow nostrils with a bit of mucus in there and he had a collapsed lung. 

[00:16:59] Emma Pickett: Okay. Oh gosh, I wish I wasn't super duper expert and an ENT doctor and I could join all these dots 'cause, but babies must mouth breathe less than one.

They get colds. Anyone who's breastfed knows that they get a cold, but there was something about ro, which meant he wasn't quite able to get into the mouth breathing. Pattern and you know, he was obviously struggling to coordinate all his different breathing patterns, et cetera. Yeah. So moving forward then when he got better, what did that look like?

So he just wasn't as stuffed up anymore. How did they know he was better? If it was to do with structure? How do you get to the point where he's able to get healthy and go home, if that makes sense. 

[00:17:38] Ruth: Um, so I suppose that he didn't need, require any treatment for the collapsed lung, that sort of self healed itself.

Um, and had a course of antibiotics 'cause they queried if he had some kind of infection. But he was so, no. None of his lab results ever came up with an infection. But they sort of said, because he's so little, because he's so newborn, any kind of infection, we'll stop attacking before we can even detect it, sort of thing.

So he was getting better. I was trying to feed him, trying to express, trying to, and then he. Have a lot through his NG tube still. 

[00:18:16] Emma Pickett: So he was getting milk through his NG tube and, and you were obviously 

[00:18:20] Ruth: cuddling 

[00:18:20] Emma Pickett: him and you got support for Ang care and all that stuff. Yeah, a lot of 

[00:18:23] Ruth: skin to skin, all that kind of stuff.

[00:18:27] Emma Pickett: And the, the, the words collapsed lung are super scary, aren't they? They don't, that doesn't sound great. We've all seen kind of, you know, movies where people get collapsed lungs and people are kind of jabbing virals into them and it, it doesn't sound, it sounds really spooky, scary. When someone said that to you, was that the sort of lowest moment?

What was the kind of toughest moment in that process of him going to nicu? 

[00:18:49] Ruth: Probably him still arriving. I find the most overwhelming point for me, um, just getting there and once. They knew something was wrong, he wasn't breathing properly. His oxygen's really low. We can put him on oxygen. We know what to do from then on.

So the collapsed lung was kind of like, well, that is an answer, and he's in the right place. So it didn't really stress me out, I don't think. It didn't really, I. Send me anywhere, I suppose. 

[00:19:17] Emma Pickett: Okay. Well that's good. I don't want you to be sent anywhere. I'm just That's good. No, um, but I can see when, you know, we're, we're coming up for two years past that moment.

I can see, just thinking about his arrival is still quite emotional for you and there's something Yeah, absolutely. That's really, really stuck with the 

[00:19:31] Ruth: most overwhelming part of it. 

[00:19:32] Emma Pickett: So you're doing, you're doing a great job at maintaining your breastfeeding. You're doing lovely kangaroo care. You're doing your expressing NG tubes.

When was he then back to breastfeeding again. And were you able to get comfortable? Were you, I'm waiting for you to tell me that you were in pain for five months, which I'm hoping you're not gonna tell me. 

[00:19:48] Ruth: Yeah, we were. Oh, we were in pain for a long, long time. Um, so we continued to try it. And then I think one of the support workers about four or five days in just said, do you wanna try nipple shields?

And just gave me one. Didn't really do much from there than that. Um, so it gave me a nipple shield and we gave it a go and that felt like at that point was a turning point for upwards. We managed that for a long time, so we probably did nipple shields then meant he was able to fully feed from me. I didn't need to do anymore.

Um, I did keep pumping for a little while just to make sure that my supply was meeting his demand still, but nothing after that went really down the NG tube. Okay. 

[00:20:38] Emma Pickett: So you were feeding with nipple shields, and then how long was he in NICU before he left there? 

[00:20:44] Ruth: 10 days. 

[00:20:45] Emma Pickett: Okay. And then you're home at that point?

[00:20:47] Ruth: Home? Um, still under midwife. 

[00:20:50] Emma Pickett: And has he had any formula up until now? Has he had any other from your mouth? Yes. Did he had 

[00:20:55] Ruth: a few bits of formula in the first three or four days down the NG tube. Um, whilst I wasn't able to express what they calculated was his need. 

[00:21:09] Emma Pickett: Okay. '

[00:21:09] Ruth: cause they were doing sort of weighing to calculate what hidden take he have.

How often in like precise milliliters. Um, so I was given as much as I could through pumping, and then they'd top up bits of formula, but he never took a bottle. Um, he pulled out the NG tube one night before we tried the nipple shields and they were sort of, oh, we don't really want to put it back in if we don't have to.

Let's give him some of like, he's really struggling with latch, but he really needs this milk. We're really worried about him. Um, they had done a bit of cup feeding. They'd never let me do any of the cup feeding. They'd sort of said that was for trained staff to do, do you want to try a bottle? So we tried a bottle.

I tried giving him a bottle, um, and he wouldn't take it. Didn't latch onto it. 

[00:22:02] Emma Pickett: The thing about parents not cup feeding is really interesting, isn't it? I dunno how you feel about them saying that. Um, 

[00:22:07] Ruth: at the time I think I just let it wash over me and hadn't really looked into it or thought about it much.

But now I. Think I wish I'd stood my ground a bit more. 

[00:22:18] Emma Pickett: Yeah. It comes down to daft things like liability insurance and you know, people being worried about legal risk, but parents are cup feeding babies all around the world and all through human history and, um, you know, syringe feeding and cup feeding and finger feeding is just part of how we get milk into babies.

And it's interesting how some hospitals are like, yep, we'll support you to do this. Let let us teach you. And other hospitals are like, you are not allowed. It's such a variation, isn't it? Mm-hmm. So it's amazing to hear that you got home and you were feeding directly with the shields and he wasn't getting any, any other milk.

That's pretty amazing. And it, are you in pain with the shields still? 

[00:22:54] Ruth: No, not with the shields. I remember generally with the Shields. No, I remember. Maybe about three or four weeks old having one night where it was really painful. He was like biting my nipple through the shield. That was incredibly painful.

Like it was worse than without it at all. And remember ringing like the breastfeeding helpline and the NCT feeding helpline and things like that, and just getting really mixed answers and just very like confused about what was happening and why he was doing that. And then. Think I sort of watched some YouTube videos on Nipple shields 'cause I wasn't really sure if I was doing it right.

'cause I'd just been giving them basically, and I don't think I was applying them. Right. 

[00:23:40] Emma Pickett: Okay. 

[00:23:40] Ruth: And then I did that and it sort of fixed itself. The biting 

[00:23:43] Emma Pickett: stopped. Okay. Right. So you weren't doing the sort of inside out thing where No I wasn't. You create a vacuum, 

[00:23:48] Ruth: whacking it on and sticking him on it. And then I did the inside out.

He vacuum me after that. Was much better. 

[00:23:56] Emma Pickett: So a slightly deeper latch maybe? Yeah, a bit more breast tissue going in his mouth meant maybe he was able to position more easily. So that biting down is something about probably his positioning. He's probably not saying that he's, he's probably saying I haven't got enough breast in my mouth.

I'm a bit frustrated. I haven't got quite enough tongue contact or chin contact, so I'm gonna be biting down with my gums and using lots of kind of compensatory techniques instead. So you are working really hard to make breastfeeding happen, but, but sort of stuck with shields. What, what led you to get in touch with a lactation consultant?

What was the kind of trigger point for you on that? 

[00:24:30] Ruth: Um, I suppose I, I dropped the shields at one, at, like, had a tongue tie consultation. I dropped the shields. I just hated them so much by that point. About seven, eight weeks. And then his weight always remained low. When you look on the charts that you get in your red book, he's always low.

He was always sort of skirting that bottom line. It sometimes it'd be up it under it up, put under it as he went. And I remember maybe about four or five months and I'd been constantly reviewed every two weeks by the health visitors still for this weight, and it just hadn't. Really moved as much as I thought it was gonna move.

And I just remember thinking, I can't take this anymore. Like this is stressing me out so much. Something isn't right. It hurts, it's not right. I think I'd spoken to like the breastfeeding helpline and they had said. You really could do with some face-to-face support from a lactation consultant. I remember ringing my health visitor and being like, do you have this?

Like this is something that I think should be available within your service. And they came back to me and just said, no, we don't have this. You can attend one of our breastfeeding support groups, 

[00:25:51] Emma Pickett: or 

[00:25:52] Ruth: go off and spend, 

[00:25:53] Emma Pickett: you know, 80, a hundred, 120 quid, whatever, 

[00:25:55] Ruth: whatever it is, and, or, you know, you can pay for the, the one person.

One can consult that happens to be in your area and can show, oh 

[00:26:03] Emma Pickett: gosh, it's so cr, cr, cr. It's just bananas, isn't it? But that was a positive experience for you, apart from the fact that you had to pay. That was amazing. A really good, yeah. You had a good, do you wanna give her a shout out? You don't have to if you don't want to.

Um, 

[00:26:15] Ruth: uh, Jane Cousins, I will shout her out every single day. Um, no, she came to her house, she made me feel, heard, spoken to, listened. And her background was more actually in like tongue ties and sort of. Um, that kind of thing. Oh, and she did like some craniosacral therapy, I think it was, where they sort of moved his head around.

Mm-hmm. And I think that she said, yeah, she did that. Um, and she did a little exam of his mouth and she sort of said his palates really flat, so his upper palate was really flat and his gums were really wide. So he had this very sort of interesting shaped roof of his mouth. And she sort of said. I'm not surprised.

This hurts. And I'm not surprised he can't take a bottle because this, it's, it is, it, it's off. Just 

[00:27:02] Emma Pickett: feels different. Yeah. Okay. 

[00:27:04] Ruth: He was never gonna take a bottle. And I remember at that point I'm going again, I remember at that point just bursting out, crying and just being like, I knew this wasn't right.

[00:27:14] Emma Pickett: Yeah. All that time you've been battling and thinking, this was me, this was me. What? Why can't I do this? And it, it wasn't you. 

[00:27:21] Ruth: It wasn't me. It was. We row and we just tried. And we tried and we tried and we continued and we got there and we're fine. And his weight to this day is little. His weight is still skirting that bottom line.

And I just think, but he is fine. He's happy, he's healthy. 

[00:27:43] Emma Pickett: Take a breath. This is important stuff, isn't it? We're talking about the beginning of your mothering world and, and, you know, feeding our little babies, nothing's more important and it can feel really emotional reflecting on some of those, those big steps in our journey.

Um, so three cheers for Jane who helped you feel heard and, and seen and, and helped you think about moving forward. I want to tell you about my brand new book called The Story of Jesse's Milky. It's a picture book for two to six year olds, and I wanted to write a book that was about weaning, but also not about weaning, because breastfeeding journeys end in all sorts of different ways.

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There are beautiful illustrations by the very talented Jojo Ford, and the feedback from parents so far has been so lovely and touching and I'm really excited to share the book with you. If you're interested in my other books for Older Children, I have the Breast book, which is a guide for nine to 14 year olds.

And it's a puberty book that puts the emphasis on breasts, which I think is very much needed. And I also have two books about supporting breastfeeding beyond six months and supporting the transition from breastfeeding for a 10% discount on the last two. Go to Jessica Kingsley Press. That's uk.jkp.com and use the code MMPE 10 Makes milk picket Emma 10.

Tell us a bit more about his head. When did you start to feel, Hmm, now I'm gonna need some help with this? Something doesn't quite feel right. 

[00:29:35] Ruth: Um, I suppose back on the nicu, actually, I remember he always, he, because he was so little, his head was still very big proportionally for his body. So he would, even from birth, he could roll onto his side 'cause he'd just sort of throw his head over and his body would follow.

[00:29:52] Emma Pickett: Mm-hmm. 

[00:29:54] Ruth: So he'd sleep on his side and he'd always sort of rolled the same way. So his head was wonky then. And I remember talking to one of the NICU nurses and sort of saying, his head's a bit of a funny shape, don't you think? And she said, oh, well, he keeps rolling onto it, so maybe we should try and roll him the other way.

So I remember trying to roll him the other way and just sort of didn't really think much of it After that for a little while, couple of weeks later, the health visitor came and I said. His head's this slightly funny shape, like it is not really like that even. And she said, oh, okay. Um, well I should have done something by now if it was like due to the birth sort of thing.

'cause they can get funny heads from birth, can't they? Like they get squeezed, but it wouldn't hang around that long. It would around that long. I go, okay, no, no, no. I'm thinking of it. And it was our check at the six week appointment with our gp and they said, no, this isn't right. I'm gonna refer you on. I'm gonna refer you to the pediatrician to look into this.

So they referred it on for his head, then, and then, then your mind kicks in and starts wearing again. What? What could this be? Why is his head this funny shape? So you start googling all these awful things, don't you? Dr. Google comes into action. Yeah. And then this is when I heard cranio synosis and was Googling that and then it explained almost perfectly what was Rowan's head.

Okay. Like this sort of wonky side assessed on one side sort of thing. 

[00:31:24] Emma Pickett: Do they know what causes it? Why does some children get premature closure? We no 

[00:31:28] Ruth: idea. 

[00:31:30] Emma Pickett: Okay. 

[00:31:30] Ruth: Um, sometimes it's genetic. Um, they don't really know. For Rowan. Um, I think it's sometimes genetic. For rowing. It's not, um, for, I think sometimes multiple happen in families, but I don't Okay.

Don't think they know really. 

[00:31:49] Emma Pickett: So you're under the care of the pediatrician and that's, and that's a word I'm not gonna try and say it again, but here I go. Cranio, stinosis. Yeah. That, that, and that's the word that they used in the consultations you had with them. 

[00:32:03] Ruth: Um, no, no. I think they then referred us onto a, what's called like a super center.

So there's only four or five in the country that deal with cranio Synosis. So my local pediatrician referred us onto the specialist hospital at Birmingham. So we traveled to Birmingham for all of our appointments around this to discuss that. So they did sort of CT scans and looks, and they sort of see they under dodge because.

Like I said, it was this seen by his eye as opposed to this, usually the big ones across the top of heads that usually, okay. Okay. So they, um, an A for a bit, I think what to do. Um, his consultant actually took him to a, uh, like 3D, printed his skull and took his scans and stuff and went to a conference in Helsinki and discussed him with a load of worldwide c craniofacial consultants.

About what they would do with this 

[00:33:00] Emma Pickett: weird presentation of, isn't that interesting? Gosh, imagining his little skull in a bag going on a on a flight to Helsinki. We're 

[00:33:07] Ruth: desperate to get ahold of this little 3D printed skull. We think it's gonna be fascinating. Um, 

[00:33:13] Emma Pickett: so you are kind of waiting, waiting, knowing.

Yeah, waiting. Something's might happen. Have another 

[00:33:18] Ruth: appointment, find out what's going on, what they decided to do. And then it took till he was about 11 months old, they brought us in. For his, like, usual three monthly appointments and they sort of said, right, we've decided what we're gonna do now. Um, so we were given a plan, and that is generally what's happened.

So he had a surgery just after he was one and they put what's called a cranial distractor in. So they opened him up all the way across the top, loosened up the plate. So that it was sort of free moving, but would pivot across 

[00:33:53] Emma Pickett: the suture. Okay. So they, so they had to kind of, oh, I hope you don't mind me using the word cut, but they had to sort of cut the bit that had fused Yeah.

To, to, to loosen it away and so it wasn't attached anymore. And what's the cranial distractor made out of? What, what does it, 

[00:34:06] Ruth: uh, like titanium. So it's like a screw that screws into the side and then pokes out of the skin at the back. And so we would be, require to turn that. Every day. 

[00:34:18] Emma Pickett: So you are the ones that turned it?

Yeah. At, at home. So as you turn it, you are what, separating it a little bit? Is that what you're doing? Yeah. So 

[00:34:26] Ruth: it would sort of pivot that, um, plate in his forehead against sort of pivot with the forehead across the front to bring it out a bit. 

[00:34:37] Emma Pickett: Okay. So you are treating him. That's kind of cool. On one level, you're the, you're the people doing the treatment.

But before we talk a bit more about the distractor, and I'd love to hear a bit more about that, how that works day to day. I'd like to take you back to the hospital where the surgery's being done. A big bit of surgery opening up someone's head. And you've shown me a picture of him in the hospital with that, with the scar across his head.

And it's not little. It's pretty big. Yeah, it's big. Um, how did you find that experience of being back in hospital? And tell me a bit about how breast. Feeding worked around the surgery. Were they, first of all, were they supportive of you breastfeeding? Very other side of the surgery? Yep. 

[00:35:11] Ruth: So he was nil by mouth, um, for, I think it was like 12 hours before surgery and you could only give him food and milk up to certain times.

But with it being breast milk, they said it can be a bit later. 'cause I was having panics thinking we're gonna be up from about 3:00 AM because he won't go back to sleep without feeding. And he is just gonna scream and I've always fed him back to sleep his entire life. But they were very much more like, no, you can feed him till later with breastfeeding.

That's not a problem. They let you stay on the ward with him afterwards. And when they brought him round, they sort of said, oh, can you come in? He is quite unsettled. You can do whatever you need to do to settle him. And that was feeding him. So we did that at. 'cause it was a different place. It was a different environment and I was more prepared for it.

I knew what was coming. I think it was a lot calmer. I definitely had my tearful moments then sort of when they put him to sleep. 'cause I held him as they put him to sleep. And that was a lot. But I think overall it was much more of a positive experience. I think all the nurses and doctors that were there had had a lot more confidence.

I suppose I'd been prepared and warned. Yeah, to go from there 

[00:36:22] Emma Pickett: and it must have been really special to have them supportive of breastfeeding. I mean, I would expect nothing less, but no one's sort of implying that you're getting in the way or you know, we can't tell how much milk he's had if you breastfeed.

So that's difficult for us. It sounds like they were very supportive of that. 

[00:36:36] Ruth: Yeah. So the das me sort of, how long was he on for what? Like, yeah. What feeling has he had? I think at one, he still hadn't really had a massive uptake in his solids. He was still. Even at one was still mostly still on milk for his diet.

So we were doing a lot of that still. They'd ask, they'd make sure he was getting his liquids and and what have you, but they were very supportive of it and their policy as well as, 'cause I was feeding him, they would feed me, whereas usually they'd only feed their patient, which would be Rowan. Okay. 

[00:37:07] Emma Pickett: And you are?

In an environment where obviously there are tubes and things sticking in him. And how, what kind of positions were you using? What did a feed look like? 

[00:37:16] Ruth: Uh, whatever. We could make work mostly sort of cross cradle, but again, I had like, my mum was around and my partner was around and sort of one of us would hold and then like I'd hold him and then sort of work all the tubes around us so that we could feed.

And he had a massive bandage across his entire head. Like a huge helmet. So his head was like two or three centimeters of all the way around, which was very cumbersome in the way and the distractor being sort of just above his ear. I was really worried about that and feeding him sort of. 

[00:37:49] Emma Pickett: Yeah. So when he is on that side and that part of his head is pressing into your arm, that must have felt a bit scary or, or were you doing something different when you were feeding on that side?

[00:37:59] Ruth: I think I was just trying to hold my arm a bit lower just to support his head Still. Uh, so that he could rest on me and fall asleep feeding, um, but not push into it as much. I remember it oozed for a lot of days as well and that was just a bit gross generally 'cause that would like run down my arm as I was holding him on that side.

[00:38:19] Emma Pickett: So some sort of fluid, I dunno exactly what that was, but you, yeah. Were you get, when you, when you got home you had supported you from like wound care nurses and people coming to visit you 

[00:38:29] Ruth: generally just um, sort of closed itself up? I think it was just some natural bleeding. 'cause your head obviously gets a lot of blood.

Naturally, and that was just, it was an open wound. 'cause the screws stuck out the skin, 

[00:38:40] Emma Pickett: I guess. I guess if you've got that screw there, there's a, there's a lot going on in terms, and if it's moving every day, that's a bit more movement every day. I guess it makes sense that the wound takes a bit longer to, to, uh, adjust.

So you've got the little bit of metal sticking out of his head. Mm-hmm. I'm guessing he needs pain relief. How, what kind of pain relief were they giving you in those early days? I 

[00:39:01] Ruth: think for the first sort of 24 hours or so, he had stuff through like, um, he had like a central line in his neck. Okay. So it was like, um, a bit like a cannula.

So he went into his neck and had some tubes dangling out of it. Um, so he had some pain relief through that. And then he went on to sort of your general sort of carpa and ibuprofen sort of. 

[00:39:23] Emma Pickett: Okay. 

[00:39:23] Ruth: Um, through a syringe that we just give him orally and then. After about three days, I don't really think he was having much at all.

Breast milk was his 

[00:39:32] Emma Pickett: pain relief. I imagin. Yeah. Pretty much breastfeeding and breast milk. So you're home with the distractor and, and the thing that you turn, does that look like a little screw and you and what, what does that actually look like? The thing you are touching? 

[00:39:45] Ruth: Yeah. It looks like a little screw.

So it sort of came out straight and then it had a, a dangly bit on it so that you could sort of. 

[00:39:52] Emma Pickett: Like a little Allen key from that key, that sort? Yeah, like a little Allen 

[00:39:55] Ruth: key. And we were given like a special screwdriver that would only turn one way, so we couldn't accidentally close it. So it would turn one way.

It had a little dot on it, so you could have to count how many turns you did. Okay. So that you turned it the right number each day, weren't overturning it or overturning it. That's quite a lot of responsibility. 

[00:40:13] Emma Pickett: I mean, I'm totally, I, I believe you can do it and I, you obviously did, and, but. You've gotta be quite a whew.

You've gotta have quite a bit of bravery to do that, I think. I mean, and, and no ickiness around it and, and feeling comfortable. And were you worried about hurting and how quickly did it feel? Oh yeah, this is the thing I do. This is just normal. 

[00:40:32] Ruth: So they did it a few times with us on the ward, and we had to do it twice a day.

So I think she came for a day or two and did it each time with us. But I think my sort of, um, approach as a person is just sort of. Get on with it and I'm gonna have to do it. I need to do it. I was prepared to do it. They told me I was gonna have to, so I did. I suppose. Is there a dressing over it? What's No.

[00:40:58] Emma Pickett: No. That just comes off. Okay. 

[00:41:00] Ruth: Once the big helmet bandage came off, it was all open just to left. 

[00:41:05] Emma Pickett: And what happens if he kind of bumps into it? 'cause people that age must drop and fall. I mean, is it strong enough? It's not a problem. 

[00:41:10] Ruth: It was strong enough. It was not a problem. He did have a few tumbles where he'd fell onto it.

And a little bit of this was like after it all, it stopped using and stuff. It had fallen tumble onto it like a few months later and it would stop bleeding and that would, oh my god, it was awful. But I remember ringing a specialist nurse the first time it happened and she sort of said, just watch out for your general symptoms of concussion.

Really? Like it shouldn't be much different just 'cause he's fallen on to it. Okay. I think because the openings there is why it's bled as opposed to. It's caused damage in a deep way. It's caused damage. Yeah. Yeah. 

[00:41:45] Emma Pickett: Okay. And so how long did you do the little turns for? 

[00:41:49] Ruth: We did the turning for about three weeks, and then that was maxed out at the distractor length of three centimeters.

Yeah. And then he was meant to have the distractor out and another reshape of his forehead. Okay. So because it was so recessed. He had to have the distractor so there was enough bone when they moved his forehead for it to grow in there. 'cause if they just tried to do a reshape to begin with, it wouldn't have been enough bone there for that.

Okay. 

[00:42:21] Emma Pickett: So it's a bit like the surgery people get to make their bones longer. You, you make the gap so the bone repairs in the gap and he's, he's making bones. Mm-hmm. So not only are you turning to make a gap that he's, his body's putting the bone in the space. Ready for that surgery. So he goes back and has further surgery.

How did that all go? 

[00:42:39] Ruth: So he had the distractor out and was still actually waiting for the last reshaping surgery. 

[00:42:45] Emma Pickett: Okay. 

[00:42:46] Ruth: There was an infection in it, so it just meant they couldn't, well, it wasn't really the best idea since there was an infection in the distractor to then sort of spread the infection if they did the full reshape.

So we're still just waiting on that should be at the end of this month. 

[00:43:00] Emma Pickett: Okay. Gosh. The surgery will be the end of this month. Gosh. Okay. How are you feeling about going back and doing that? 

[00:43:05] Ruth: Yeah, I feel f like prepared now. It'd be like the third time I'm going to do it. Uh, yeah. Okay. I'm not looking forward to, he's much older now.

He's just harder to entertain, to keep contained. He run off, he wants to play. Um, so just keeping him on a ward environment, I'm not looking forward to. 

[00:43:25] Emma Pickett: Yeah. 

[00:43:27] Ruth: But I don't think I'm worried about the sort of medical side of things. As much at all anymore. So in 

[00:43:34] Emma Pickett: terms of reshaping, do they, do they put something else in his head or is it now just using his own bone to make that make the shape?

Oh, it's 

[00:43:41] Ruth: all a bit, I can't really fully get my head around this, but I think they take like a strip of skull sort of air to air across the top of his head out. So they cut that out, loosen up the plate that needs to move forwards, and then sort of jigsaw loads of pieces around to sort of bring that up.

And then there'll be dissolvable plates and screws in his head after they've closed him up. Wow. 

[00:44:07] Emma Pickett: Super clever, isn't it? Unbelievable. Yeah. Okay, great. So you're still breastfeeding and was there a conscious, you talk about, you know, you were always gonna hang on till two. Was there part of you thinking, I'll wait for this surgery 'cause actually that it's gonna be good to be able to breastfeed through the surgery or that's just a coincidence that you've happened to be continuing?

[00:44:26] Ruth: More coincidence at this time. And I think I also now, at this point, I'm like, I don't know how to stop. He, he's, he's not got the communication yet to be able to have those discussions or not discussions. Even just sort of even communicate that Mommy is tired. Mommy is like, mommy's not prepared right now.

When we was trying to do something that he couldn't feed, um, he's not quite there yet to have those discussions to stop. And I'm not in the. Yeah, I don't really feel the need at the moment to start. Yeah. I, I was just 

[00:44:59] Emma Pickett: gonna say, I don't wanna put words in your mouth, but when we're at the very beginning of our conversation, when we talked about your breastfeeding, there was nothing negative about it in terms of your, your impression of it.

It was very much it meeting his needs, and he is sunny and happy and, and when it stops working for you. Then changes can happen and I'm not going anywhere. Come back and we can talk about it and you know, I've got free resources that will support you through that as well. Um, you know, when you need to make changes, you can make changes, but at the moment it sounds like it's, it's really working for you.

And is everyone around you also supportive of your breastfeeding journey? Is there anyone saying, oh, come on now, he's getting a bit old. 

[00:45:37] Ruth: No, I've not had those. Um. No, there are no comments around being too old or anything like that. I think the difficulty is I've had 18 months off with him while all this distractor and stuff were going on.

I decided I wasn't ready to go back to work and put him in nursery like that. So I've had even longer off than what I ever planned to with maternity leave and things. And I think the difficulty now sits with. It is his main source of comfort when he is upset, stressed, tired. So when other people are trying to watch him, now that I'm back to work, I think they find it quite difficult and I think it's a difficulty for them as opposed to I need to stop doing it to make it easier for them.

They're just sort of expressing frustration. 

[00:46:24] Emma Pickett: So I was saying I'm sure. They would probably agree with us as well. It just happens that you're breastfeeding, but even if you weren't breastfeeding, if you'd been with him for 18 months, solidly one-to-one care all day long, you were gonna be missed anyway.

Yeah. I'm If it wasn't your breastfeeding forum. Yeah, exactly. It would've been the way mommy cuddles me, the way mommy helps me get to sleep, whatever it is, it's, you know, you, you being missed, not just the breastfeeding and the idea that ending breastfeeding. Necessarily make someone's life easier is something that I always think we should question because, um, it's, it's bigger than that.

It's about his connection to you and actually he's meant to miss you. It's meant to be hard if you are his primary carer, it's not meant to be a super easy adjustment for someone else to look after him all day long. How have you found being back at work? Do you, do you have, you've been okay. Has it been tough leaving him, not just for him, but for your, from your perspective, how have you been getting on?

That 

[00:47:14] Ruth: sounds awful, but I've been great. I have been so ready. I love him beyond the end of the world, but as a person for my own mental health, I've needed to go back to work. I've loved having this time off with him, but I've been so ready to go and have different conversations, not about babies, not sat on the floor, not in baby groups, trying to make small talk with people, but yeah, I've loved it.

He is. Loving nursery. He loves, um, he obviously does the whole kickoff when I drop him off. Pretend that I've abandoned him for life. But I, they get, send me pictures 10 minutes later and he is sat happy in his breakfast and, um, they can entertain him and do those things with him that I didn't have the time, or not the time, but the energy to do with him anymore.

[00:48:04] Emma Pickett: Yeah. They've got a different skill set. Mm-hmm. That's their job. So when you go for the surgery at the end of this month, he's gonna have to obviously be off nursery again. And you'll have to have a bit of time off work. What's the, what are the plans around that? 

[00:48:15] Ruth: I've got loads of annual leave because I've had so long off.

Um, I didn't use any of annual leave, um, work. Were very kind of, let me have it as sick for sort of strats around Rowan. So I've got annual leave to use for those three weeks. I think he's gonna have bout off. 

[00:48:30] Emma Pickett: Okay. 

[00:48:31] Ruth: Nursery have supported him having that time off. Um. They're not charging me, which I think is fantastic.

Gosh, that's great, 

[00:48:37] Emma Pickett: isn't it? Yeah. Yeah. Good for them. 

[00:48:40] Ruth: I know a lot of places are sort of, well, you have to, to maintain your place, you have to pay for what you're going to have. But no, they've said don't need to and work have let me take out all as much annual leave as I need. Or they've said I could have some carers if it really gets to that point.

But 

[00:48:56] Emma Pickett: I think I'm fine. I'm so glad that you're, you've got the support from where you need it. That's brilliant. You've got this lovely Air Ruth, of just being really kind of practical that not, not, not to say you are unemotional 'cause you've got even got emotional in our conversation, but you're also kind of, this is where we are, this is the little bloke I have lucky enough to be the mama of this is what we need to do and we're just gonna get on.

We're just gonna do it. Um, do you have any moments of, oh, he's vulnerable, Rowan and his head is a bit. Sensitive and be careful and don't climb on that climbing frame. Do you find yourself being overprotective? 'cause you're giving me the vibe that you're not or you're not? No, 

[00:49:32] Ruth: I don't. You're absolutely right.

I'm very much like, no, go and get on with it. You're a kid and every kid's gonna have like stumbles and trips and bumps and that's just gonna be what it is. And you look out for those regular signs of concussion and things like that and you go from there. I don't want him to think that anything is different about him.

[00:49:56] Emma Pickett: Yeah. Well that's great. Lucky. Lucky him. And, and with his breathing issues, when he was super tiny, do you, and he is obviously got this nasal passage issue when he does get a cold, does that, is that something that's a bit more scary? Does he, is he more likely to struggle with breathing? 

[00:50:12] Ruth: Uh, he did to begin with, uh, definitely when he was like 2, 3, 4 months old.

That was. An awful time. I remember just struggling to feed him at those points because he'd be snotty and then off on, off on like try to a few socks off, take a few deep breaths, go back on. I remember that being very awful. But he's sort of grown out of it in a way. He's still very snotty. He's got his, but his 

[00:50:36] Emma Pickett: noss have got bigger, I'm guessing, 

[00:50:38] Ruth: and it's got bigger.

I think generally that, yeah, that's what his ENT consultant said, sort said. Either it'll get worse and we'll do something or he'll grow out of it. And he'll just manage. 

[00:50:49] Emma Pickett: Okay. Can I just ask you a little bit more about the, in the infection, the distractor infection, is it, I mean, there's an open wound there all the time.

Presumably during the, the, the separation phase, is that where the infection enters? Is that what happened? Yeah, like piercing. 

[00:51:02] Ruth: So that sort of being kept open, the skin being kept open, it just wasn't very happy about it. Like a, if a piercing gets rejected sort of thing, it sort of kicks out what it can, doesn't it, um.

So it was a bit like that. So it would go sort of crusty and gross and we'd have some antibiotics that would clear it for a bit. But then because it was still there and like the body hadn't been able to get rid of this foreign object in it, it just kept getting a bit worse and worse. 

[00:51:32] Emma Pickett: Okay. That delayed things a little bit then, but there's no long lasting issues around that.

Hang up once that's gone. Okay. 

[00:51:38] Ruth: So when they took the distractor out, they gave it a good wash and closed him all back up again and put us on him on some antibiotics, and it is now all cleared up. He's just got sort of a bigger scar issue area. Okay. On that side. So you've 

[00:51:53] Emma Pickett: got a little bit where hair won't grow because of the scratch.

Yeah. So he's got hair that 

[00:51:56] Ruth: won't grow in a big wiggly line all the way across the top of his head. 

[00:52:00] Emma Pickett: Okay. Like a little, a cool baseball shaped strip. Um, yeah. Okay. Bless him. I saw a gorgeous little photo of him. He's a little legend. Okay, well very, very best of luck for the surgery at the end of this month.

And, um, thank you so much for sharing your story. It's really appreciated. Uh, is there anything we haven't mentioned? With regards to breastfeeding or with regards to the craniosynostosis that you think we need to cover, particularly if we're talking to a mom who has maybe just found out that her younger baby has it, what message might you want to give them?

[00:52:32] Ruth: That it'll be okay that they, they know what they're doing. I remember being on the wards and there was other babies on there that had it, and they were getting the best care that they could. I think. 

[00:52:44] Emma Pickett: Yeah, I mean, so it's, is it so one in 2,500 babies have this condition? Yeah, sounds about right. It's quite a lot, isn't it?

That's actually quite a lot of babies. 

[00:52:52] Ruth: Yeah. 

[00:52:52] Emma Pickett: So it's not like it's reinventing the wheel. They know, they know what they're doing as their No. They know what they're doing. 

[00:52:56] Ruth: Yeah, and I think Rowan is particularly uncommon, like Rowan 'cause of that 

[00:53:01] Emma Pickett: side 

[00:53:01] Ruth: because the section, the side section, they didn't know what they were doing, how further back it was.

I think a lot more craniosynostosis is sort of, they treated much earlier. They find out within, I mean the babies next door, us on the ward were sort of three, four months old, whereas Broan was over one. And they have a lot more sort of less invasive things that they do. So they will do like a endoscopic surgery.

So they do it, uh, through a tiny little hole, and then they have like helmets that like shaping helmets. Um, okay. More usually than Rowan. 

[00:53:36] Emma Pickett: Okay. So you wouldn't necessarily need the distractor if someone else has the central, you know, the central plates, for example, you could possibly. Just have the endoscopic surgery to do a separation and then the helmet to hold it in place.

Yeah, that's, 

[00:53:48] Ruth: I don't think they'd ever really put the single distractor in before for a granial Synosis. Okay. Like, that's how uncommon Rowans is, was, yeah. 

[00:53:57] Emma Pickett: Thank you so much for sharing your story today. Really appreciate it. So good luck with the surgery. Tell us how you get on with the end of the breastfeeding journey.

Um, if you ever want to chat about weaning, I am. I'm here. And, uh, I'm really grateful for your time today, Ruth. Thank you 

[00:54:11] Ruth: very 

[00:54:11] Emma Pickett: much. Thank you for having me.

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.