Breastfeeding in palliative care with Dr Laura Thomas

This week, I’m honoured to be joined by Dr. Laura Thomas, a community pediatrician from Reading, La Leche League leader, and breastfeeding peer supporter, to talk about breastfeeding in pediatric palliative care. Laura explains her day-to-day work with neurodiversity and neurodisability, her training and her own breastfeeding experiences. We discuss Laura’s masters project using a questionnaire for palliative care and pediatric staff, which found breastfeeding is often not considered unless families request support, and that staff want simple guidance and signposting. We explore why breastfeeding and milk donation can matter at end of life and after bereavement, highlight resources like the Memory Milk Bank and Herts Milk Bank, and consider practical hospice support and future research into lactation supporters’ preparedness.

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 - 

The Milk Bank at Chester https://www.milkbankatchester.org.uk/donationafterloss/memorymilkgift/

The Human Milk Foundation https://humanmilkfoundation.org/hearts-milk-bank/donating-after-bereavement/

Breastfeeding the Brave https://breastfeedingthebrave.com/

Framework for Practice: Lactation and loss | British Association of Perinatal Medicine https://www.bapm.org/resources/lactation-and-loss-management-of-lactation-following-the-death-of-a-baby

Together for Short Lives: Children's Charities - Children Hospices https://www.togetherforshortlives.org.uk/

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 today to Dr. Laura Thomas, who is a pediatrician from Reading about breastfeeding in palliative care. Now, if you dunno what that is, that's okay. That's why this episode exists, and if you didn't even realize that was something we need to think about, that's also okay because that's what we're gonna be talking about today.

Thank you very much for joining me today, Laura. Tell me about, first of all, your life outside of this project. So you are a pediatrician and you're also, you also do breastfeeding support, don't you? So, yes. Let's start first of all with your doctor hat on. What kind of work do you do day to day?

[00:01:24] Dr Laura Thomas: So I am a community pediatrician, um, which means I primarily work with children who have either neurodiversity, so I do autism and A DHD assessments.

Um, all those with neuro disability. So that's the group of patients, group of children who have long-term, um, conditions that affect their development. Um, so things like cerebral palsy down syndrome, and that sort of thing.

[00:01:51] Emma Pickett: Okay. I don't think I know what the word community means in that context. So you're not in, you're not in a hospital, you're in a what?

Tell, tell me what that word community means.

[00:01:58] Dr Laura Thomas: Yeah, it's a, so it's probably. It is, it's probably one that confuses a lot of people. Um, it's, so my, I am based next to a hospital, so I work as part of a hospital team and, and most of our clinics take place in hospitals. Um, but we are not an inpatient service, so we don't tend to have patients admitted to the ward.

We mainly do sort of clinics and, and outpatient work, and we spend a lot of time working with other services within the community. So social services, education, health visitors, that sort of thing.

[00:02:31] Emma Pickett: And before we talk about your own breastfeeding experience and training. When you were becoming a doctor?

I've been doing a little survey about this recently on my Instagram. Did you get any lactation training? What is, what was your lactation training like as part of your general medical training?

[00:02:47] Dr Laura Thomas: So, as a pediatrician, I spent quite a lot of time on neonatal units and most of the neonatal units that I worked on were breastfeeding friendly or were working towards breastfeeding friendly initiative.

Um. Is it sort of the UNICEF program? So I have done the BFI training a couple of times throughout my train, throughout my career.

Okay. Um, but that was it.

[00:03:12] Emma Pickett: Okay. That's still a lot more than most people get when they are pediatricians, even pediatricians. So that, that's good to hear. But obviously there's a whole lot of specialist knowledge that mm-hmm.

Is just assumed that you won't need or care about. Yeah. Or want and, and hopefully conversations like this and people like you will, will help to change that for the future. Now, I don't necessarily want to ask you personal questions if that feels uncomfortable, but I'm a nosy person by nature. Can I ask you about your own parenting and breastfeeding experiences?

[00:03:37] Dr Laura Thomas: Of course.

[00:03:37] Emma Pickett: Tell me, tell me about your family.

[00:03:39] Dr Laura Thomas: Um, so I'm mom of two. I have two boys who are nearly five and two. I was always keen to breastfeed both of them. You know, my, my mum breastfed me and all my brothers, and it was always just sort of accepted that, that that was. What would happen. Um, and I was really lucky in that, that I, I always had some support from the, from my family.

I guess when I started, when I first, when I had my first, I was sort of aware that it wasn't necessarily going to be as straightforward as I would maybe like, because I'd seen plenty of families come through a and e or the wards where there'd been problems with, with getting started or problems with weight.

Um, you know, all the sort of things that we encounter often. But actually my breastfeeding journey with my first was pretty smooth. He was great. He latched on straight away and fed until he was about 13 months. Um, and we weaned only because we wanted to try for a second, and I was in that group of people who didn't get my period back whilst I was still breastfeeding.

Okay. And in retrospect, I, I slightly sort of regret that we, we weaned when we did, but. It gave me the family that I have, so I'm, I'm grateful in that sense. For my second, I was, again, sort of expected that it would be easy and straightforward and then it wasn't. Um, and he was so initially went well and then quite quickly became really painful and I had, I got quite sore, painful, cracked nipples, um, and was really struggling with that.

And then was lucky enough that I had a, a close friend at the time who I'd known. Since my first was born, but who, in the time that I'd known her had trained to be a breastfeeding peer supporter. Okay. And I reached out to her and I was also on a, a breastfeeding peer support group on Facebook. And it had sort of reached out to them at the same time.

And it was only by doing that, that someone sort of said, oh, have, have you been to any in-person groups? Have you seen anyone about breastfeeding? And have you thought about tongue tie? And, you know, he didn't have an obvious tongue tie, but they're not always obvious. And actually through that I then started going to La Leche League meetings and ended up seeing an IBCLC.

Uh, and he, he did indeed have a tongue tie, um, which was snipped at about 6, 6, 7 weeks. And then after that, things kind of settled down and, and, um, thankfully became easier. And he, he's now two and a half and is. Probably coming to the end of our breastfeeding journey, although it's a, it is, we're at that sort of, it, it's a bit hit and miss and every so often he'll decide he wants some more milk.

Thank you very much. Stage.

[00:06:13] Emma Pickett: Yeah. I, I recognize that. Um, so what's the sort of typical 24 hours for you at the minute? Is he still breastfeeding through the night? What does, what does life look like for you?

[00:06:20] Dr Laura Thomas: He often will go, you know, a, a couple of days, even a week or so without feeding, and then it, it tends to be a, when we're snuggling reading a book or, or doing something in the evening, he'll go, oh.

I might have some milk. Thank you very much. So I think it's very much tailing down, but it's, neither of us have consciously decided to stop and it's very much just a comfort bonding thing.

[00:06:44] Emma Pickett: So you haven't been nudging that process. You, there's nothing you did, you didn't night wean, you didn't particularly do anything?

[00:06:50] Dr Laura Thomas: No, we, I did night win with my first. With my second, we, we sort of talked about it quite a lot, and then he started sleeping through the night by himself. Um, probably around good for him. 18, 19 months. And it, yeah, it just stopped being a thing.

[00:07:09] Emma Pickett: Um. There's some people who've just dropped their sandwiches, Laura, listening to that.

[00:07:13] Dr Laura Thomas: I'm sorry.

[00:07:13] Emma Pickett: No, no, no. Listen, it's really important to represent the whole range of breastfeeding and for people to hear that it is absolutely possible to have someone, so, first of all, some people have just dropped their sandwiches at the idea of a self winning child at two and a half, and other people are shocked that he, you know, self weaned at night, self night weaned.

It happens. We absolutely do meet these people, but we don't always get to represent those stories. Um, it's, it's really good. Certainly don't apologize for it. Um, had you gone back to work at this point had, what's your story with pertaining to work?

[00:07:41] Dr Laura Thomas: I, yeah, so I, with my second, I went back to work in about 10 months, and then I guess part of the weaning was probably supported by the fact that I, I did still do, after my initial return to work, I was still doing on call, so I did still have some night shifts and some long days when I wasn't seeing him.

And I had a couple of trips away to conferences. Um, and, and similar, so a few periods where I was away from him for I think maybe the longest was five days, which probably contributed to it becoming less of a, less of a needed thing and more of a comfort thing in many ways.

[00:08:14] Emma Pickett: Yeah, potentially. But you know what? I meet people who go away for work trips and still are lept on when they get back. And, and breastfeeding is still really frequent, so who knows. Yeah. Um, um, but also. Good for people to hear that you can do a work trip, and that doesn't mean an end to breastfeeding and, and that's something that can continue afterwards.

Okay. Thank you for sharing all that personal information. Much appreciated. And am I right in thinking that you've also done a bit of additional breastfeeding training as well?

[00:08:38] Dr Laura Thomas: Yes. So I, I'm a La Leche League leader now. Um, so I train with my local group, um, and I, I also volunteer as a breastfeeding peer supporter with Milk, which is a, a Facebook group specifically for medics, um, for doctors.

[00:08:55] Emma Pickett: Yeah, we've had a few members of milk, um, on this podcast. Yes. So it's very honored, very honored to have another one. Um, and gosh, so training as a La Leche league leader while working as a pediatrician, while doing your masters that we'll talk about in a minute while looking after two boys who aren't old.

That's pretty darn impressive. Um, how do you, do you sleep? I mean, what would have time for anything else?

[00:09:17] Dr Laura Thomas: Yeah, I will say I didn't do it all at the same time, and it, it did take me a while to get through the training for La Leche League. Um, but I think I've been lucky that I, I've had a really supportive family.

Um, you know, my husband's always been on board with all of the bits of my life, um, and does contribute quite a lot to the childcare to make things possible. But I've also been really lucky to have some really supportive colleagues, um, and, and to work with. They're really good people who are enthusiastic about similar things.

I mean, one of my colleagues at the moment is also an I-B-C-L-C, um, one of our doctors, which has been fantastic for helping me get the last bits of the various training done.

[00:09:58] Emma Pickett: That's brilliant. That's good. That's really good to hear. So, okay. Before we talk about the project, one very practical question I'm gonna ask you here, you're working as a pediatrician, you're starting night shifts.

You have an 11 month old who's still breastfeeding. Your, I'm guessing your husband's doing care when you're leaving. Yeah. And you're not around at nighttime. How did you get on with doing bedtimes without you? How did he get on with that? What did that look like? 

[00:10:21] Dr Laura Thomas: You know, I don't really know, 'cause I never really asked.

[00:10:24] Emma Pickett: Um, I respect that. Can I just say, I really respect that You don't, what, it's not none of your business actually. Is it really? Yeah. I mean, at the end of the day, it's about them. It's about their relationship.

[00:10:34] Dr Laura Thomas: I think we, because we've been through it with my first. And we, and at that point we'd had to make, we'd made the conscious decision to notwe him in preparation for me going back to work. So we'd sort of accepted that, you know, mark would be the one going in overnight when he woke up. Um, and then when I was out late, it was just a, well, you've got daddy, so Mommy's not here. And I, I think that was probably part of what worked for us when we moved, when we moved on to that and, and it was him trying to get 'em down at night.

I wasn't there, I wasn't in the house, so there was no, I I, there was no, I give up because he's not going to sleep and he's just crying. I'll go and get mommy. It was, I wasn't there. That wasn't an option. And actually we were lucky that, that both of them quite quickly sort of accepted that, okay, when it's daddy, it's daddy and they did both take bottles.

Um, so they were getting express milk via bottle and they'd have cuddles and he'd, I think, stay in the room with them until they were asleep. But he never. He never said that it was particularly difficult. Certainly never told me if it was.

[00:11:41] Emma Pickett: Yeah. Um, it's, yeah, it's his, it's his thing, isn't it? Yeah. He makes the connections. He develops the skills and Yeah. It's not, I think it's interesting how, how many moms and, and I probably, um. Slightly guilty by even asking the question, how many moms feel. It's their responsibility to make sure that that situation is under their control. And it's your job to upskill your partner and not the case at all.

And actually, you're absolutely right. When you're co-parenting the, the parent develops all their own strategies and it's not much to do with you. So that makes sense. And how did you get on with your breast health while you were working? So if you're on call or something, did you have any sticky moments where you were struggling?

[00:12:18] Dr Laura Thomas: I think the, the trickiest thing going back to on calls was that wasn't. My, so I, I was working across two different sites and the, at that time, the community side, which was my sort of clinics and and specialist training, was absolutely fine because there was a room available that I could go and express in.

I could work it around my clinics and my free time, and actually it was much more flexible. When I was on calls or doing night shifts work, were very supportive and I, you know, I was told that's absolutely fine. You can express when you need to, you can use the fridges. Um, I was at the time covering both the neonatal unit and the general pediatric unit when I was on call and I, you know, I was told, well, you can use the expressing room on the, on the, the neonatal unit if you need it.

But that wasn't always quite as straightforward as people made out, um, because often there wasn't anybody else who could hold an on-call bleep. So if there was an emergency that came in or something happened, you know, a delivery that I needed to go to, I couldn't say, oh no, I can't go. 'cause I'm in the middle of expressing, I would just have to stop and go.

And also, when I was covering both those sites, our neonatal unit and our pediatric, um, unit and our a e were not particularly close together. So actually sometimes it, you know, if you're in the middle of a busy, busy shift on the ward. It wasn't feasible to take the five, 10 minutes to walk up to the neonatal unit to then spend 20 minutes, 30 minutes expressing and then walk back down.

I think by the, by that time I was, my supply was regular enough and I'd been doing a lot of expressing already because I had been donating milk. That actually, I knew that as long as I had sort of 15, 20 minutes, certainly I could easily get enough off to make myself comfortable and look after my own health.

And I could mostly get enough during sort of two breaks in the day to provide enough for a bottle for, for my youngest one at bedtime. Okay. So, yeah, I think it was it, the people were supportive. The logistics were not necessarily straightforward.

[00:14:19] Emma Pickett: Yeah. Yeah, I can imagine. I'm trying to imagine what it's like being on call across two sites that aren't that close. I mean, presumably what you're doing with an emergency in one place and sometimes the other place needs you.

[00:14:28] Dr Laura Thomas: It's challenging, and I think it is getting better, but it's not an unusual situation to find yourself in when you're a pediatrician, particularly on in the middle of the night. But more and more places we'll have now two people on to cover.

Okay. Separate people covering different sites, which. It's good.

[00:14:46] Emma Pickett: Tell me a bit more about your milk donation. I say that with my trustee of the Human Milk Foundation hat on.

[00:14:50] Dr Laura Thomas: So I guess that having worked on neonatal units, I was quite used to the idea of milk donation and donor milk for the premies. And even, you know, from, from when I was pregnant, it was something that I wanted to be able to do because I, I've spent, you know, I've, I've often given it to babies who I was looking after, so I wanted to be able to give something back.

The same way. And I, so I contacted, um, the local milk bank, um, reasonably early in my first, so I think, I think with my first, I contacted them sort of within the first couple of weeks and was told, yeah, happy to have you wait until your supply is established,

[00:15:29] Emma Pickett: hold your horses lady , whoa.

[00:15:30] Dr Laura Thomas: Wait until you're established and then we can, yeah.

Um, and then, so with my second, I, I waited until the, the sort of six to eight weeks mark. And then with both, I, I never did a huge amount of expressing. So I would tend to express, to donate maybe once or twice a day alongside a feed. But I think across the two children, we probably donated something like 30 or 40 liters.

[00:15:56] Emma Pickett: Wow, that's fantastic. And yeah, it just felt like a really important thing to do.

[00:16:02] Dr Laura Thomas: Yeah. I mean, it's great to see, see you doing that because you've just, there's such a natural connection, isn't it, from the work.

[00:16:08] Emma Pickett: Mm-hmm. And seeing the difference it makes. Why do you feel it's worth it? Why do you feel donor milk matters?

I'm not asking you to write a logo or slogan or anything, but why is it important, do you think?

[00:16:18] Dr Laura Thomas: I, I guess this, this comes in a bit to, to why I ended up doing my project in the, in the area I did, but. So we know that breast milk is best for babies. You know, there are so many things within breast milk from sort of a nutritional point of view, an immune immunological point of view, uh, that, that you just, you can't replicate in formula.

And there's plenty of evidence saying that. And for the really vulnerable babies that we look after on the neonatal unit who are preterm, who've had gut infections or other infections, who, you know, they are. They have so many other things that are challenging them. To be able to provide them with the best nutrition is really important.

And there are occasions where for whatever that reason is, mom can't produce enough to be the one giving that to start off with, you know, the, the PREMs who were born at twenty four, twenty five weeks and or when mom is really sick herself. So having donor milk to be able to give. Is, it is a lifesaver. I think for for many babies.

It is genuinely that it's a lifesaver.

[00:17:30] Emma Pickett: Yeah. Beautifully described. And we also have lovely research showing the impact on mental health for parents. So the recipient parents have better mental health outcomes and also better outcomes for their own breastfeeding as well. So the unit itself tends to have better breastfeeding results and be more breastfeeding supportive in a cultural sense.

And that also impacts on the parents who then breastfeed and go on to produce their own milk for their own babies. So yeah, important stuff for sure.

Let's talk about your project. So for anyone who has literally never heard the phrase palliative care before, what is it?

[00:18:03] Dr Laura Thomas: So palliative care is the care that we provide to infants and children who are reaching the end of their life.

And that can be for a number of reasons or so, it can look like a number of different things. The biggest palliative care charity for children in the UK is uh, a group called Together for short lives. And they have definitions that sort of describe the, the children that we look after. They, they can be children who have life-threatening diagnoses, so things like cancer diagnoses where they, there may be a chance of survival, but there's also a chance of, of not surviving.

It can be children who are born with conditions or diagnosed with conditions that are expected to cause their death. And the period, you know, that the period of time over which that can happen is variable. Um, so some of them will live a long time. Some of them will live very short days, or it can be children where they have conditions which we know are associated with a higher risk of death.

That's often patients like the ones that I work with in community pediatrics who have diagnoses like cerebral palsy, where they are, the condition itself won't cause their death, but they are vulnerable to infections or, or other things. And palliative care is about caring for those children, not in trying to fix something that's wrong, but to make the life that they have with us as good as it can be.

And it, I think the, the core tenet of palliative care is about being holistic and looking after every part of the child and their life, and that includes their families. And it's something that when it's done right, it can have an enormous impact on. The quality of life for the child, but also for their parents and the, the rest of the family, and not just during the child's life, but actually beyond that as well and into bereavement.

[00:19:56] Emma Pickett: Okay. So it's a, it's a big umbrella term. I, I guess I thought, I assumed wrongly that it always meant an expectation of death, but from what you are saying, palliative care sometimes is for people who may get better again, potentially sometimes. Yeah. Which I, I did not realize at all. But, um, so you're obviously palliative care as a term applies to any aged person.

Yes. Um, but all, but you are, as a pediatrician, your focus is on, on children and, and babies. So you worked with this group particularly during your masters and obviously you do professionally. Tell me a little bit about your master's.

[00:20:32] Dr Laura Thomas: So I did a, a master's in, um, palliative care based in Cardiff, um, with Cardiff University. An all encompassing masters. So it was not specifically about children. Um, and many of the people that I met there were adult doctors or nurses or, or physi healthcare professionals in some form. Um, but it had a specific pediatric thread and I was doing that. So I started doing it before my, my first maternity leave or during my first maternity leave possibly.

And continued it throughout because it was something that I was interested in. And then, uh, in the, the third year, uh, of the masters, we were asked to do a project and that coincided with, so my, my second at the time that I started my project was about five months old. And we, we'd sort of just got through the tricky early period of breastfeeding and as part of that, I'd spent quite a lot of time thinking about.

The breastfeeding support that I got and the breastfeeding support that we provide to those around us. But also thinking about, well actually, are there groups that we are missing? And there definitely are. And I'd also encountered some of Lindsay Hookway's work about Breastfeeding the Brave. So, um, work on breastfeeding children with medical complexity or when they were in healthcare settings, so readmissions and, and sick children after the neonatal period.

And so when I was trying to come up with a project, I wanted to find something that would tie in my interest in breastfeeding and breastfeeding support with the palliative care group, and had conversations with some of my palliative care colleagues, um, at one of the hospices that I was working at around the same time about breastfeeding.

And it very quickly became apparent that actually there was a group of children who probably weren't getting anything for whom breastfeeding definitely still had benefits. And could be really helpful and really useful for them and for their families, but it just wasn't recognized maybe.

[00:22:35] Emma Pickett: Yeah, I mean, I, uh, Breastfeeding the Brave for anyone who's not familiar, Lindsay Hookway's book is amazing.

And also there's a Facebook group for, for parents and, and anyone who's dealing with a, a child who's unwell or needing medical support and as you say, beyond that sort of very young period. Um, and she, her PhD. As it was on, um, breastfeeding in this context. And so we've got so much energy, haven't we, going into breastfeeding well babies and, you know, all the resources are going there and we're forgetting that 18 month olds can be admitted to hospital and two year olds can be admitted to hospital and breastfeeding is happening, you know, in so many different contexts where it's not being recognized. And, and as you say, sometimes in hospices, sometimes in environments where you know, there are even more complex outcomes.

I had love to tell you about my four most recent books. So we've got the story of Jesse's Milky, 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 parenthood weaning. Maybe he will 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 are 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 mm PE 10. 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.

Let's talk about some of the challenges. I'm gonna make an assumption here, and you can come back at me if it's wrong. I would assume that if someone is a medical practitioner. And they don't understand breastfeeding. It feels like an extra complication. Like I don't know how much nutrition that child's having.

I can't control the hydration. It feels complicated rather than something to welcome because they just don't have an understanding of it. Were you coming across prejudice like that?

[00:25:51] Dr Laura Thomas: I think that's, that's definitely something we found on the general pediatric wards. So when children were in hospitals, um, and it's something, yes, we definitely had lots of experience in dealing with that when I was.

Looking after children who are coming back in, you know, with pediatric wards, with respiratory illnesses or um, you know, the ones that were sick and ending up on picu. I think that specifically was probably less of a concern in the palliative care arena because actually certainly when you're getting towards the end of life, but even before that, there is a change in the focus of care.

And I think it's another reason why we actually, this group is different from, from the ones that breastfeeding the brave was maybe looking at. Because when you're reaching the end of life, actually the nutrition and the hydration and calculating it and documenting it become less important. Okay. And we are more focused on, well, actually what's.

What's comfortable, what's important, and I suppose if you think of, of adult palliative care, which, which maybe people are more familiar with thinking about, it's, it's when you are reaching that point of changing from, or you can't have food because you're set, you're not safe to swallow it and you can't drink water because you might end up with an infection to, well, actually that's what you want, you know, in, in the last weeks, and I, I remember this from, from when my. When my own grandparents were going through palliative care towards the end of life, it being a, well, actually, they want to have a drink. They want to have their favorite food. That's the thing that brings them comfort and normality. So why not give it to them? And, and it's the same in pediatrics, you know, with our, with our older children in the, in the hospices.

You know, I, I knew children who had Freddie Frogs prescribed on their drug charts because for them that was, it was that important. So I don't think it was a, a discomfort with the idea of not being able to track how much milk was going in or how many calories or what the hydration was. I think often it was just that it didn't occur to people, particularly with slightly older children.

With the, you know, the, as you say, the, the nine month old, the 18 month old. Where you're not immediately leaping to that as a form of nutrition and food for them anyway, because of how the wider culture now thinks about breastfeeding and a whole host of other things. And I think that just meant that it, it often wasn't recognized as something that might be important.

And that was something that came through in the project when I did it. So the, the project itself was. It was a questionnaire, um, that went out to palliative care and pediatric staff. So people who worked with that group of patients focusing on actually what did they know and, and what support were they giving.

And one of the things that came back in the, the thematic information that we gathered was that actually a lot of people hadn't thought about it had, it had never occurred to them that it was something that they might be able to offer or that families might want to support, want support with. And when it had happened, it was because the families had asked for it.

And that really stuck with me that, that it was, it took a family who was already established in breastfeeding, knew it was important to them, knew that it was something they wanted to be able to continue to reach out and ask for that specific support at a time that is already an awful time in their lives.

You know, regardless of how good the care they're getting it, it's somewhere that nobody ever wants to be. And it just felt like we should be doing more to make that easier. And make it something they didn't have to ask for.

[00:29:30] Emma Pickett: So what sort of support do you think they need? What would, what do your, if we're creating the ideal environment, what?

What's in that environment?

[00:29:38] Dr Laura Thomas: I think initially it just needs someone to be able to say, this is something we can think about. Just bring it up, be aware of it. And beyond that the, there's a lot about, well, actually, where if there are specific needs, you know, for children where maybe there are neurological problems and actually the latch and the suck is difficult and or if there are supply problems for mom, well, who can we be going to?

Who can we be asking? And I think for hospice is to know who to approach. So I don't think you need to have a lactation consultant in every hospice. I think hospices just need to know if, if it's something that might be helpful, who can we go to to ask to give the family support? And then that links into all of, of the, the fantastic work that Laura Atherton's been doing around the the memory milk bank.

And that kind of comes back to donation. 'cause actually there's loads of research about how beneficial donation can be in bereavement. But again, it's something that people need to be aware of as a possibility.

[00:30:45] Emma Pickett: Yeah,

[00:30:46] Dr Laura Thomas: I think it always comes back to that, doesn't it? It's, it's actually, if we, if we talk about it, if we recognize it, that's the starting point.

[00:30:54] Emma Pickett: Yeah. Yeah. No, I've been lucky enough to interview two parents on the podcast who have donated after loss and what a significance that has made to, to their lives and, and other people's lives as well. So you're thinking about in a hospice environment, for example, let's imagine somebody loses their baby under 12 months, milk supply is, is fairly high. There's quite high volume. Obviously in the middle of that, parent's bereavement, we're worrying about their mastitis risk and their breast health, but we're also thinking about the value of potentially continuing to lactate. For someone listening to thinking what, how, why would that be valuable?

Can you talk through why that might be important?

[00:31:33] Dr Laura Thomas: So breastfeeding is about more than nutrition, and that's the case for everyone. It's something that creates a bond between a mother and a child that you know, you, I don't think you can replicate in many ways. And I think it also, oh, I'm trying to gather my thoughts to find words to say it.

It's breast is comfort and it's purpose, and it's something you can do. It's a way of being there for your child. That only you as a mother can do. And it's not something that just stops when the child isn't there anymore, but that also means that the bond that it's created doesn't just stop. And I think there are, there are lots of people who've talked about or written about the fact that it, it can give parents a way of holding onto the link that they have with their child.

And creating purpose for the child themselves. That, you know, you, you don't have milk without having a baby. And when the baby's gone, if that milk then goes to help someone else's baby, that's, that's something that they have done and that you have done that brings something good in from something awful.

[00:33:01] Emma Pickett: Yeah, I mean, it's a, it's a very physical link, isn't it? It's the continuation of pregnancy and birth. It's your body still recognizing the existence of your baby and the part they played in the world and they've got, you know, their little hole in the world is still there. You know, their influence in the world is still there and that is super special.

So some people will go on to lactate for weeks or even months, you know, produce large volumes and send it to milk banks, and some may only lactate for. A few times, but maybe create something that can be used to make a memento or, or some sort of physical representation of their lactation journey.

Obviously, to end lactation quickly can also have a hormonal effect as well that would, could potentially amplify, um, some difficult feelings around loss. I mean, I don't think you can make it any more difficult, but weaning blues on top of, um, bereavement must be particularly horrible. So gradually winding down lactation makes a lot of sense.

So that means that staff that work in these sorts of spaces need to understand the value of donation after bereavement. Um, what kind of resources do you recommend? Tell me a bit more about, um, the memory Milk bank and for anyone who doesn't understand what that is.

[00:34:13] Dr Laura Thomas: Um, so it's, it's a Milk Bank that's set up, I think is Chester way, and they support.

Um, families to donate after bereavement, whatever that looks like. And they have, they have lots of lovely resources that they can share with families and they recognize all of the families that have, have donated. And I know they, they will also take pre-ex express notes. I think they have quite strong links with lots of the neonatal units.

Um, where, you know, all of this that we're talking about are things that people working on neonatal units probably know a lot better. Because they're much more used to it and see it a lot more often.

[00:34:54] Emma Pickett: Yeah. Herts Milk Bank is another resource. So, so Herts Milk Bank also accept donations, um, from bereaved parents and, and they, they call them their snow drop donors.

And, um, they, you know, they go and plant snow drops and they do all sorts of lovely things as part of community and, and yeah, so Herts Milk Bank is another resource I'm familiar with. I'm sure there are other milk banks around the UK that also have their own programs. So it's, it's recognized more and more and Herts Milk Bank have a special leaflet um, just about donating after bereavement. If anyone is a professional who wants to kind of get any of those to have in the, in their setting. I think sometimes, and it's probably the case also with organ donation, is people think, oh, do we, I don't even wanna have that conversation. Mm-hmm. You know, it takes training to have that conversation to, to understand how to start having that conversation.

And also Herts Milk Bank and I'm, I'm sure Laura too will, will help you as a professional reflect on how to have those conversations and, and how to share resources. But you, you can't make a parent feel worse in that situation actually by, so why not discuss lactation? Yeah. So we've talked about donating after loss after, after the child has died.

Let's talk a bit more about breastfeeding during the end of life. Um, why do you think that's important?

[00:36:08] Dr Laura Thomas: I think for many of the same reasons. You know, all of those bits about breastfeeding, not just being about the nutrition, it's about the, the bond, um, the comfort that it brings to children. So there are, there are a few research papers out there which show that breastfeeding is an analgesic, so it, it works as a painkiller for children when they're going through painful procedures.

Um, and it's better than many of the other things that we give little babies, you know, swaddling or, or sugar water, which, which help actually breastfeeding is better than all of those. There's, there's papers that show that it's easier than many other methods of feeding. So we often get worried about babies getting tired because they're breastfeeding, or, you know, if there are babies with, um, heart problems or, or breathing problems, that, that they're going to drop their oxygen levels.

And actually there's evidence that that doesn't happen and that babies hold their oxygen levels much better with breastfeeding than they would with taking milk from a bottle because it's a, a much more centrally controlled method of feeding. But there's also the, the comfort and the bond and being close to your mum.

And, you know, all babies will have times when they're feeding, not because they're hungry, but because they want some comfort. Um, and it's no different for, for those babies who are, who are nearing the end of their life. And for the families themselves, it's, it's a sense of purpose and normal normality when your child is very sick and needing a lot of medical care and very vulnerable actually being able to do something yourself as a parent that no one else can do.

That's really, really important and that's important. Whether they are three or four months old or 21 months old and still feeding a lot of palliative care is about. Making things feel as good as they can for the family and for many families, breastfeeding is part of that 'cause. It's part of their normal, normal way of being and way of interacting with their child.

[00:38:10] Emma Pickett: Yeah. And that word purpose that you used before, I feel that feels important as well. It, I think, I can imagine if you're a parent visiting your child in hospice, hospice or staying with them, you can feel useless. Yeah. There's nothing I can do. But if you, if you're able to breastfeed in that environment. What you're doing is so important, so valuable. Absolutely. And valued. So when you did the project, you did the questionnaire. Yeah. And you obviously analyzed all results. What surprised you? Was there anything you weren't expecting?

[00:38:38] Dr Laura Thomas: Hmm. Probably not a huge amount, which probably says a lot in itself. I think it confirmed lots of things that, that Lindsay Hook Way's work had already found about how much training or how little training and experience there was.

It echoed lots of the bits about often when there was support being given. It was informal and it was based on people's experience, not any training, which has a whole host of difficulties in itself. Because actually, if you haven't had a good breastfeeding journey, and the only basis you have to give any support to anyone else is your own breastfeeding journey, well of course you're not going to to encourage it.

It maybe surprised me a little how many people in the palliative care world felt uncomfortable talking about breastfeeding because actually these are people who are trained and have lots of experience having difficult conversations.

[00:39:34] Emma Pickett: Yeah. It's interesting, isn't it? I wonder whether it's, you touched on something before about being a pediatrician yourself, and this is a conversation I've had with a few other pediatricians.

The, as a population, you meet the very unwell breastfeeding children and the very unwell breastfeeding babies. Yeah. And, and naturally potentially have a bias of, you know, crikey, all these breastfeeding babies that, you know, lose 13% and have horrendous medical complications. And, uh, similarly, I once spoke to a, um, ambulance, um, emergency chap who said all old people lie on the kitchen floor as far as they're concerned. Every 90-year-old they've ever met someone who spends half a day on the kitchen floor. Um, so, so I wonder whether there's an anti breastfeeding bias because of that, because medical people are more likely to meet the challenging breastfeeding experiences.

[00:40:18] Dr Laura Thomas: I dunno, possibly. I'm just looking out loud. I think that I wouldn't be surprised if that was part of it. I mean, I know I'm obviously very pro breastfeeding and always have been. But I know that my attitudes to childbirth were very much colored by the fact that I only ever went to deliveries where things were going wrong.

So it's, it's easy to extrapolate that and say, yes, actually we see the ones who are really sick and come back in and where breastfeeding isn't working. And it's also, I think there's, there's a bit about guidelines and what we're taught to follow and how we talk to follow things as well. Um, because actually as I was doing this work.

The BAPM, the British Association of Perinatal Medicine had very recently come out with their lactation after loss guideline, which was amazing 'cause it was the first thing that I'd seen at all that was a guideline that focused on how to support families. Maybe not the exact cohort that I was talking about, but families in similar situations.

And as pediatricians, we quite like a guideline. And actually I was already aware that lots of the guidelines that we work with. Around those patients who might be coming in with breastfeeding problems or with problems when they were breastfeeding are quite anti fixing the breastfeeding. So all of the, the weight loss ones are all about when you formula feed or you give top-ups and this is how much top-up you give and this is how often you give it.

And there's very little about, well, actually what, what if we just want to support breastfeeding? We are, we are trained not to stray away from guidelines. But actually there aren't any guidelines about breastfeeding when babies are sick. And even the ones that, even the lactation for loss after loss guideline, which is great about supporting donation and, and how you manage after bereavement.

I think when I read it through, there was maybe a, a few lines about how milk could be used whilst the baby was still alive, um, and very little else. And actually it was one of the things that came up in the questionnaire as PE people wanted some sort of guideline, something that said, you can talk about it and here's what you do if people say they want it, and here's where you go for your information.

And I don't think it would need to be a very long guideline. It would just need to be something that sign posted people in the right direction.

[00:42:31] Emma Pickett: So I know that Lindsay's been part of a, a conversation with, with baby friendly producing guidelines for children's hospitals. It sounds like, Laura, that you are going to need to produce the, even if it's just one page of a four, isn't it?

It's not, it's not lengthy because it's just about centering the, the family and potentially thinking about things like furniture and beds and, yeah. And, and so, so if, if we were going to, if I'm gonna put you on the spot here right now, Laura, and ask you to write the one side of a four, which is guidelines for lactation in palliative care. What are some of the points that you're gonna put on that document?

[00:43:07] Dr Laura Thomas: That it's something to talk about and that families don't mind being asked about it. And you don't have to be the expert. You just need to be willing to say, is it something that you want to think about and how can we help you think about it?

Knowing that there are practical things that can be useful that, you know, as you say, somewhere, a comfortable chair, access to a breast pump, somewhere to store the milk. Have we thought about all of those things? And in a hospice setting, that's not difficult because actually one thing that, that they are good at having is, is privacy and flexibility with how spaces are used.

[00:43:44] Emma Pickett: Can people co-sleep in palliative care? Is their co-sleeping space if someone has a toddler or a young child?

[00:43:50] Dr Laura Thomas: You know, that's not something I've ever asked about specifically. I know it's something that I've asked about on pediatric wards and been told very firmly. They weren't going to allow, which I have other views about.

Um, I think it, it's much more likely to be something they'd be flexible within a hospice setting. And certainly if they were doing palliative care support at home, which, which is often something that's involved in, in that whole world, then yes, they would be supportive about. Um, but certainly bringing that into the conversation.

Yeah. And then something about who do you ask for help if you think the family do need support, more support, and I, I suppose that that's sort of where I want my project to go next, or the next project, because it's all very well saying, well, you need to know that you can ask for a lactation consultant, that you can point people towards breastfeeding, peer supporters, or counselors.

But actually, if those people don't have the comfort in giving support in that situation, that's not helpful either. And I, I, I know a lot about what we don't know in the pediatric profession and the medical profession, I suppose. I don't know as much about how comfortable lactation consultants would be about providing that kind of support from their end.

[00:45:03] Emma Pickett: Um, yeah. No, that's a good question. I mean, I, my instinct was, oh, you're right on your lovely document. Put the national breastfeeding helpline number and social media's available all the time and that, you know, it's now 24 hours a day. But if someone gets that call and they weren't prepared for that and they had their own history and, and, you know, hadn't had a chance to reflect on that, you know, you, you've got no idea who you're coming across, so, so peer support training.

Needs to include this. It's, we are so quick, aren't we? To, to bash the health professionals and say, oh, you know, evil doctors and nurses dunno about breastfeeding. But equally peer supporters dunno about palliative care. Peer supporters don't know why it matters and why it's important. And what, what are some of the questions that might come up?

So it's kind of training on both sides needed.

[00:45:45] Dr Laura Thomas: Yeah.

[00:45:46] Emma Pickett: Yeah, I mean, co-sleeping is something I think that we need to definitely make sure is part of the conversation, because I'd imagine if, if in a home setting, not, not ho complicated, but in a hospice setting, if that's the child's normal and that child is, you know, under five, for example, to, to have that removed from them, it's gonna be very distressing for everybody. Um, breastfeeding through the night is such a big part of a little person's life for, for lots of other people. Yeah. Okay. So we're writing the document. It's got something about talking about. Um, donation after bereavement. Mm-hmm. It's got something about resources and where to signpost and, and you're going to be finding out who those people are and providing training for peer supporters and, no, no pressure Laura, but that's gonna be in your future.

I'm making your to-do list for you here. Uh, we also need to make sure that lactation consultants have that training and a more specialist settings. So, um, that's a conversation you can have with LCGB as a starting point. And in that room there needs to be breast pump access a fridge. Um, a comfortable chair and probably some visibility of breastfeeding a a po, a poster somewhere.

It's, it's so much part of it's cultural messaging that makes a difference, isn't it? If you're going into that environment and you see one poster that talks about breastfeeding, you know, if you've got any questions about breastfeeding, you can ask us. What that psychologically does for that family is so important.

Yeah, so you're designing a poster as well, that's also on your to-do list. So what would you like to do next? You talked about specifically focusing on where people would sign post. Tell me what you are going to do next.

[00:47:15] Dr Laura Thomas: So I am hoping if I ever get the funding all the time or Yeah, access to, to ethics committees, et cetera, to to do a second survey, um, for lactation consultants and breastfeeding, um, counselors and peer supporters about.

What their knowledge would be about palliative care, what their comfort levels would be and actually what they would need. And it may be again, that actually what they need is the knowledge of who to signpost those mums to. Because I think there are, well, I, I know through, through some of my other work that there are a number of, a small number, but there are some, um, IB CLCs who are medically trained.

In some forms in nurses or doctors who would be more comfortable providing that specific area of support. Um, and it may be that actually what we need is, is a little group of us who can have those questions directed towards us if yeah, if they come up on a very personal level, I am hoping, again, subject to finding the time, um, to, to train as an I-B-C-L-C and to be able to, to speak to the, to at least my, my local hospice and offer that support or something. Something that they can contact me for. Yeah. But that only fixes a tiny bit of the problem.

[00:48:40] Emma Pickett: Yeah. I mean, I say this as an I-B-L-C-L-C. You could do that now, Laura. Mm-hmm. A La Leche League leader has had a significant amount of training and you will be able to support with most of the common problems that that will come up in breastfeeding support. And I don't think I-B-C-L-C qualifications will add anything extra to that. Other than a status, you won't have additional training in that area as a, as a lactation consultant. Um, so Okay. You've got quite a lot to do there, Laura. That's quite a big to-do list. Yes. Um, I mean, I, okay. Being a bit cheeky here, I think you already know the answer about what peer supporters and what breastfeeding counselors and what lactation consultants will know. I think you already know, like, you, like, you sort of, sort of weren't surprised by your first survey. Yeah. I don't think you'll be surprised by your second survey. I wonder whether there's a value in talking to the parents as well. Yes. Who's, who's been breastfeeding in that setting, and what was their experience like and what was missing for them?

[00:49:31] Dr Laura Thomas: I think you may learn a lot from

[00:49:33] Emma Pickett: Yeah. I'm telling you, I'm telling you stuff you already know, obviously, but, um, and, but that's a, but that's a pre, presumably that's a difficult survey to do because everybody is, is just scattered and, yeah. Don't necessarily stay in one place. Have, you know, going through different levels of bereavement and, and so how do you talk to that population in that moment?

[00:49:53] Dr Laura Thomas: It's probably why I've done things in the order that I have, because actually the easy, the easiest cherry to pick was talking to healthcare professionals because that's what I am. And then in terms of all of the bits around research, like ethics, approval and funding, it's easier to, to, to approach the lactation consultants.

But it's very clear that actually you need all three bits of that puzzle picture. And the most important one is actually what the families want and what they need and what would work for them. I've had some conversations, um, in the past with um, people like, um, Emily Tamm, who is an amazing, absolutely amazing person who's aware of both worlds for different reasons.

And I know that it is something that actually families who've been through. Would want to help with and would want to be part of, but as you say, it's just working out how to approach them. Um, and I, I, the initial work is all about getting everybody on side so that I can do that next step and then start making changes.

[00:50:57] Emma Pickett: I'm imagining a, a world of peer supporters who have, are parents that have been through that experience. That's obviously a, a population that would need an enormous amount of support themselves. Yeah. To be able to be peer supporters. But how magical that would be to say, well, I'm gonna buddy you up with this person who's we're happy to now talk to you and then help you think about what your journey might look like. But I guess what's also complicated is every journey is different. There isn't one experience that every family going through palliative care will have.

Thank you so much for your time today, Laura. I really appreciate it. Is there anything that we haven't touched on that you think we need to?

[00:51:34] Dr Laura Thomas: I always like finishing when I'm talking about my project by saying that actually when you start talking about breastfeeding with the teams in palliative care, with the people who are looking after these children. They very quickly recognize how important breastfeeding and milk is within the care of the families.

I think it doesn't, it doesn't take a huge amount to show people that when they're already open to looking after patients in the most holistic way they can. It's just that we need to be talking about it more.

[00:52:07] Emma Pickett: Yeah. I mean, someone who's prescribing Freddie Frogs. Isn't gonna hesitate Exactly. To, to value breastfeeding

[00:52:12] Dr Laura Thomas: Exactly.

[00:52:12] Emma Pickett: And understand how important breastfeeding is to, to the family. And. But I guess I, it's about the family feeling comfortable to ask. And as you say, it's not about the brave family who raises the subject. It's about everyone just knowing that it's something that's gonna be supported before they even open their mouths.

Um, so it's, it's a cultural change as much as a practical one. Um, but I look forward to one day seeing the guidelines for breastfeeding and palliative care authored by Laura and her team. And, uh, I look forward to attending the training session that you'll be providing for lactation. You're laughing, I'm not joking. I I'm gonna be harassing you The training session you'll be providing at the conference for breastfeeding peer supporters. 'cause yeah, this work is gonna keep you busy for, for many years, I'm sure. Yes. Thank you very much for your time today. I really appreciate it.

[00:52:59] Dr Laura Thomas: My pleasure.

[00:53:04] Emma Pickett: 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.