Breastfeeding with Down Syndrome

There are many outdated perceptions and myths around Down syndrome, one being that ‘babies with Down syndrome can’t breastfeed.’ March 21st is World Down Syndrome day and this year’s theme is #EndTheStereotypes. Peer supporter Sarah Ojar, breastfeeding coordinator for the charity ‘Positive about Down Syndrome’, shares her experience of breastfeeding her son Zephy and working with other breastfeeding families and explains that breastfeeding can be a positive and happy experience, especially with support.

You can follow Sarah on Instagram @chromosomes_and_curls

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

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

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

Resources mentioned - 

The Lived Experience - Breastfeeding a baby with Down syndrome www.positiveaboutdownsyndrome.co.uk/breastfeeding/

https://positiveaboutdownsyndrome.co.uk/wp-content/uploads/2022/10/12112-PADS-Breastfeeding-Report_Oct2022.pdf

DSUK - Down Syndrome UK www.downsyndromeuk.co.uk

Breastfeeding a baby with Down Syndrome - The Breastfeeding Network www.breastfeedingnetwork.org.uk/breastfeeding-information/diversity-in-breastfeeding/breastfeeding-a-baby-with-downs-syndrome/

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

Transcript

Hi. I'm Emma Pickett, and I'm a lactation consultant from London. When I first started calling myself Makes Milk, that was my superpower at the time, because I was breastfeeding my own two children. And now I'm helping families on their journey. I want your feeding journey to work for you from the very beginning to the very end. And I'm big on making sure parents get support at the end to join me for conversations on how breastfeeding is amazing. And also, sometimes really, really hard. We'll look honestly and openly about that process of making milk. And of course, breastfeeding and chest feeding are a lot more than just making milk. 

Emma Pickett  00:46

Thank you very much for joining me with today's episode. I am delighted to be joined by Sarah Ojar. She is a mom of five including multiples. She has been a volunteer supporting breastfeeding families in Lambeth for many years. And we're talking today because World Down Syndrome Day is the 21st of March, which is the week that this episode is going out. So today we're going to focus on how we can support all families to breastfeed and take some time to educate ourselves about Down syndrome. Thank you so much for joining me, Sarah. I'm going to cut to the chase here. Some people will be listening to this first question and thinking, Oh, I do quite often listen to this podcast. But you know, I don't have a child with Down syndrome. I don't know anyone else that has a child with Down syndrome. I'm a breastfeeding peer supporter. If I met somebody who had did have a child with Down syndrome, it probably wouldn't be me who supports them. So maybe I'm not gonna listen to this episode. What would you say to somebody to encourage them to keep listening?

Sarah Ojar  01:46

Thanks for having me on to chat. I think it's really important to hear about Down Syndrome, because it's the most common genetic chromosomal difference. So there will be people here that are listening that may go on to have a baby with Down syndrome. And there will definitely be supporters that may have family coming in to ask for information and support. I think maybe there's a bit of a misconception that families of a baby with Down Syndrome are getting specialist support, which we found not to be the case. And actually, they are accessing local groups and like phoning the help lines and things like that.

Emma Pickett  02:30

Yeah, I think that's really important too. To stress, we sort of imagined that we that there's, there's a specialist service out there, you know, the specialist feeding experts, and you'll get your special appointment and have this ongoing support. But it is going to be the bog standard peer supporters, the bog standard helplines, who are going to be supporting these families, not least because as we'll discuss in a minute, you know, not every child with Down syndrome does have complex feeding problems, there's a whole range of experiences. And these are the families that need peer support. And even if you don't have a child who has Down syndrome, or you're not going to go on to have a child with Down syndrome, you're going to sit next to him at the library, you're going to live near them, you're going to meet them at preschool, you're going to they're part of your community. And as a community, we need to make sure that everybody feels supported. So I'm hoping if someone's thinking, Oh, maybe this isn't for me, stick with us, educate yourself, take some messages away that one day may make a difference when you're in a conversation with somebody. So I know everyone's able to Google these days. But I would love to hear your explanation. What is Down syndrome, and sometimes it's called Down's syndrome with an apostrophe, I presume after a bloke called down. Sometimes it's Down syndrome. And there's a difference between America and the UK. Tell us a bit more about the name. And tell us about how do you explain it when someone asks you what it is? 

Sarah Ojar  03:45

Yeah, so in regards to the name, it's always tended to be downs with an apostrophe s here in the UK, and down in the US. But in recent times, the UK is adopting a down without the yes, because it was just named after the person who he didn't actually discover it. He just identified a set of characteristics. And he had her involvement in like naming it and, like identifying it. And in regards to the actual chromosomes are different. So our bodies are made up of 23 pairs of chromosomes. So you get one from the mother, one from the Father, and 46 in total, and people with Down syndrome end up with an extra copy of chromosome 21. So that happens really early, sort of as the eggs fertilised and all that sciency stuff happening, they end up with an extra chromosome, that's what we would call Trisomy 21. So that's the most common form of Down syndrome. Interested in there's actually another two types of Down syndrome which are more rare. So there's one where the extra chromosome isn't on every single cell in the body which it is with time Sep 21 It's just on a random percentage. And that's what we would call mosaic ism. So that's quite rare. And there is an also a type of Down syndrome, which is translocation. So it's where a part of the 21st chromosome breaks off and attaches onto another chromosome. And that one can either be random or it can be genetic. So those families may find they might have more than one child with Down syndrome. But again, that's a lot less common than the bog standard one is, is Trisomy 21, which is what the majority of people will have.

Emma Pickett  05:39

Okay, thanks. So. So you have your son Zephy who has Down syndrome. And you've got five children in total. Before we talk about Zephy. Can you give us a picture of everybody who you've gotten? What how old is everybody?

Sarah Ojar  05:52

Yeah, so I have five children. My eldest, Elisha, she's nine. And then next we had Zephy who is seven. And then we decided to go for a third and got three and four. So we had identical twins, and they are four. And then just last year, I had Jeremiah and he's nine months old.

Emma Pickett  06:13

Congratulations. Thank you. Great team. Great team. So tell us a little bit about Zephy then what's what's his situation? So he's the Trisomy 21 version of Down syndrome. But obviously, that's not all who he is. He is Zephy. Tell us about Zephy. What does he love? What's his day to day life at the moment? And and tell us a little bit about how his condition affects your day to day life?

Sarah Ojar  06:34

Yeah, so Zephy is, He's seven. We found out that he had Down syndrome during our pregnancy. So right at the beginning, at the 12 week screening, we got a young result of one in 29. And they asked us if we wanted to do any diagnostic testing, we actually offered a termination as well at that point. Or we could just continue and see how things went. So that's what we decided to do. We got to our 20 scan and he had some fluid around his brain, his heart and his lungs, they call that foetal hydrops. And they actually told us at that point, he probably wasn't gonna survive. So we had the amnio at that point, which said he did have Down syndrome. And then within about five or six weeks of that they all the fluid had gone and he was otherwise a very healthy little boy. Thankfully, he doesn't have any of the sort of associated medical conditions that can be common with children with Down syndrome. So heart conditions and things like that is generally very healthy. He goes to the same schools, his sisters, but there's not a school. Yeah, his sister's a mainstream school. He's in year two. And he just, he's just a great little boy. He's really funny. He's got a great sense of humour. He enjoys the same sort of stuff as other seven year old boys, you know, watch watching cartoons and kicking a ball around. He recently started learning to play the violin, he does swimming lessons. He does have a very quite severe speech delay, delay, so he uses predominantly Makaton. But the speech is common. So we're hopeful that that's going to continue to increase as he gets older.

Emma Pickett  08:20

Great. So um, it's great to hear that, you know, we're all able to go to the same school and are you happy about the support the school is able to give him does he have a learning assistant? What's the situation with Makaton and his sort of class teacher and his friends in class? 

Sarah Ojar  08:34

Yeah, so he has a full time one to one. He works with him during the school day and at lunchtime and things like that. And yeah, he his class are amazing. They've known him since reception. The school have been wonderful. They've were already doing a lot of Makaton in the school, which is one of the reasons why I was really comfortable about him going to the school. You know, every time when there's like a play or music thing, they always do a lot of songs with Makaton and it's always brought into the classrooms and things like that, and even more so in his classroom. And you know, over the years, I've had quite a few parents approach me and say how wonderful it is and how dare kids who come home and shown them their mums and dads sign signs and things like that, that they've learned at school. So it's this school really embrace him and I've been really good support.

Emma Pickett  09:25

Oh, that's great. It's great to hear. So my kids are a little bit older than yours. So, for me, my my Makaton education came from Justin Fletcher and CBS and was it Mr. Tumble he was busy using his Makaton language. That's where my knowledge comes from. So I think definitely whatever few things to teach me, thank you for sharing that story about your pregnancy. It's not right to pry into somebody's pregnancy history in this situation, and I know lots of mums who have got a child with Down syndrome or very bored of being asked questions about, you know, their decision around termination or the pressure they were under around termination. So, I want you to tell me to start off if I asked you Beneath if that feels uncomfortable, but did you feel you've got the right support during pregnancy to help you feel empowered moving forward? You're getting information about what might happen and what support looks like after birth. How did you feel about the support you were getting during pregnancy? 

Sarah Ojar  10:15

Yeah, no, I didn't feel supported in pregnancy. It was very much. This is a situation do you want to and they use the term into the pregnancy? One side said, No, they just kind of left me to it. I didn't get given any information about Down syndrome until he was born. Yeah, they just left like me to the left to to is really

Emma Pickett  10:41

Sarah I'm sorry. That's grim. And that phrase, interrupt is so odd, because interrupt suggests that it's a pause. And that's not the right language to use. So we're okay. I'm not going to go on about that. Because this is not my area of expertise. But even me as a layperson, that does feel super uncomfortable. So, so Sophie is born. And when he's born, did you so at the moment of birth, tell me a little bit about his birth? How was that experience for you in those first few hours?

Sarah Ojar  11:08

Yeah, so he came quite early. 36 plus five. So I also had gestational diabetes, I also developed obstetric colour status. I think that's how you pronounce it with the liver condition with the H your hands. 

Emma Pickett  11:25

Oh, crikey, Sarah

Sarah Ojar  11:27

It was there was a lot going on, a lot going on. And what can happen in babies with Down syndrome is because the placenta also carries the extra chromosome, it can start to fail a little bit of it towards the end. So around 35 weeks, they sort of started noticing the blood flow wasn't working as well. And they wanted to try and get me to 37 weeks. So I was going in quite frequently for monitoring. I think the last week it was every alternative day. And it just so happened, it was around Christmas as well, I think I'd done in 36 weeks, a few days before Christmas. And my eldest was like two and a half. It was the first Christmas where she sort of knew what was going on. So we really wanted to be home with her. So they said, you could come in and get monitored every other day. So we went in on Christmas Eve on our way to my mother in law's house. And I mentioned to them about my he hands and they did the blood test. And I went back to her house and we had a nice Christmas Eve and into Christmas Day. And I just felt awful. Like I had a really bad night's sleep. I just felt something wasn't right. And when I found to get the blood test results, I mentioned to them that they just felt things weren't right now it wasn't moving as much. And they said come in and they said my results have been positive. So I went in, and they just said, Look, all these be considered. Let's just introduce you now. And I was happy with that. So they did induce me on Christmas Day. And he was born on Boxing Day the next morning about six o'clock in the morning. 

Emma Pickett  13:01

No, and you obviously had had your two year old who was breastfed. Tell me a little bit about your previous breastfeeding experience. And how did that kind of motivate you around your wanting to breastfeed? Sophie? What was your first experience like?

Sarah Ojar  13:15

Yeah, so when my eldest was born, I didn't know much about breastfeeding at all. I just assumed baby comes out, put them to the breast and away we go. I didn't know many people that are breastfed I just assumed it was going to be easy. And then it wasn't. It was very painful. I'd heard people say it was going to be painful to begin with. So I assumed that was normal. A mix of papers meant I didn't have anybody come see me at home until she was like five days old. So I didn't get that first 24 hour visit. By the time yeah, by the time five days came it was just a hideous mess like I really bad mastitis. My nipples were shredded, bleeding, cracked, like you couldn't even see them. It's terrible. So I was very ill I was shaken in temperature. They sort of said you need to go down. So they took me back in and it turned out then they identify she had a really bad tongue tongue a tongue tie, which was then caught. And I healed. She didn't get on the breast actually until she was seven weeks old. So during that whole time after the first week, I was exclusively expressing. So when I finally got around the breasts at seven weeks, I was just like, over the moon and then I fed her she actually had the last feed of a couple of days before Sophie was born. So she'd sort of stopped feeding during the pregnancy, but then she wasn't feeling very well. So she had a couple of like comfort feeds. And then after surgery was born, I was away with him in hospital for about a week and a half. So that kind of like finally I used to, you know, she'd she'd pretty much stopped sort of halfway through the pregnancy. So it wasn't anything too traumatic. It felt like the natural ending, I'd had quite a bad aversion during the pregnancy. So that was a whole other story,

Emma Pickett  15:14

Sarah, you must be the world's best peer supporter because you are ticking every single eye for tough experiences that people can have a version and tongue tie and pain and Oh, my goodness, you're going through all that's amazing. And you're obviously a strong person. And when you said that thing about her not latching on again for several weeks, and finally latching on at seven weeks, anyone listening to this who works in breastfeeding support will have had faces come into their mind of mums they've supported who, in that situation who have not breastfed for the first sort of six to eight weeks baby finally gets on. They never thought it was going to happen. It finally does. It's such an amazing experience. When things finally fall into place. I think when you're weak five, you think, well, I'll be expressing forever, this is never gonna happen. But you really can get babies that get the hang of it after sort of seven or eight weeks. Do you remember that, that feed when she did actually finally get on? And how did that feel? Where were you? 

Sarah Ojar  16:08

Yes, so I can remember exactly when it was. So during the first few weeks, I've been at the peer support groups, and they've been so helpful, but I've not managed to get there yet. And I went to a group run by health as it says it wasn't a breast recruiting group. It was just baby group. And she said, is anybody still struggling with breastfeeding? So I said, I am and she said, I'm gonna come see tomorrow. So she came over. And she said to me, why don't you try and lecture when she's not actually hungry, like, just just try and lecture and see. And she just latched and I think what had happened is that I almost become a bit fearful of it, because we've had so much trouble in the earlier weeks, I'd stopped trying, because I just was, I just couldn't face it. So I was just, you know, giving her the bottle that the express milk, and actually latching her when she wasn't frantically and screaming. And we were really both stressed, actually really helped. And after that point, I just never gave her the bottle, we just, we just went straight from exclusively bottle feeding to exclusively breastfeeding. So it was all of a sudden it which I think her mask was bigger. You know, it was just all just clicked into play. So it's amazing.

Emma Pickett  17:19

That is amazing. Gosh, that's a you're obviously obviously just had this wash of confidence and realising that it was going to work to all drop the bottles in one go as soon as amazing. So So you're now with Zephie you're in hospital for a while so we can a half. Was that because of your health issues? They were doing extra monitoring? Or do they want us to keep an extra eye on Zephy? 

Sarah Ojar  17:38

Yeah, so when he was born, the first sort of hour, he was fine. He had a good feed. And actually, the first thing I thought was great, no tongue tie. It feels the lunch felt amazing, compared to with my eldest. And then after about an hour, he one of his hands went a bit of a different colour. So they were a bit worried about his oxygen levels. So the whisked him off to NICU. And that's where we stayed for the next two weeks. 

Emma Pickett  18:03

Okay. And what was that experience like for you? Did you get the support that you you wanted or you know, was the support that you wish you'd had that you didn't get? Tell us about how that would that week and a half felt

Sarah Ojar  18:14

it was a very challenging week and a half. So I stayed with him as long as I could. I was on the postnatal ward as long as I could. I think we just about five or six days, I was just like, avoided everybody that I had given me my own room. So I was just, I was constantly in the Nerney NICU, rather than like the postnatal wards, I wasn't really resting as much as I should be. I didn't want to leave him and I was sat by his side the whole time and feed him wasn't going very well. He was actually only there because he needed a bit of oxygen to begin with for about an hour. And then he was absolutely fine. But he was so sleepy, he just wasn't waking up to feed. So what was happening was I was expressing my milk came in really quickly because I'd only just finished feeding the last year, so I was making plenty of milk for him. What was happening was, he was waking up, I was finding a nurse to get his milk from the fridge. By the time they found it brought it to me it'd been warmed up. He'd been awake for probably like 20 minutes to half an hour. So by the time we taken about three or four socks, he was falling asleep, and then it was going straight down the NG tube, but then he was sleeping for another three hours and repeat. And this sort of went on for probably over a week. And then I just got to the point where I had a bit of a meltdown. I was just like this is a ride like this isn't how babies are supposed to feed and the wonderful outreach team. We had a flight they were like a feeding team had a great chat with them and they said Shall we do some demand feeding so what happened was the next time he fell asleep after a few sucks we just let him sleep and see what happens. We didn't use the tube. After half an hour he woke back up for ditch the rest of the bottle. And that was sort of the start of getting him home. Because after that, we just carried on doing that. Once he was taking, I think it was 50% of the milk, the fire a bottle, he was allowed to come home with the tube. Because I was I was confident that once I got him home, I could get him on the breast because he was latching but it was just so sleepy. And by this point, I was a breastfeeding helper with a BFA. And so I had sort of more confidence, more knowledge, I had a lot of people at my fingertips, which, you know, I could lean on and get support from so I felt quite confident with him coming home and learning to feed at home.

Emma Pickett  20:40

So you mentioned that he came home with the tube, that's that is the NG tube. And for people that don't know, that literally goes up the the end of the nose and goes into the baby's stomach, and then you can push the syringe through to feed him through that nose tube. And is that something that you were you had support to do? Did you have a nurse visiting you at home to help you with the tube? How do they manage that when you're home?

Sarah Ojar  21:03

Yeah, so they taught us in the hospital how to face we'd have to check the something in their stomach, or they pH levels have the stomach to make sure it was like going in the right place. And then you'd put the milk into the syringe and you'd feed him down the tube. We never got as far as the training on how to replace the tube. So they'd sort of said, if the tube comes out, you know, you'll have to call us or bring him in. And that's why they want him to be able to have the milk in the bottle so that if it comes out, you know, he's not he's can still have his milk. But actually he was doing so well, well with the bottle and the breast that after think it was three or four days, he pulled the tube out. And we just we just didn't put it back on and he was happy taking the bottle and the outreach team were coming to see us every few days. So we were confident that we had that support at home.

Emma Pickett  21:53

Right? Okay, that sounds like a good situation. So I can really hear that your confidence was key in this or you had that breastfeeding knowledge and you're experiencing from feet for feeding Elijah that really helps you kind of believe that you could do this, which I'm sure it's really key. 

Emma Pickett  22:10

A little advert just to say that you can buy my four books online. You've Got It In You, a positive guide to breastfeeding is 99p as an e book, and that's aimed at expectant and new parents. The Breast Book published by Pinter Martin 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 my last two books are 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 MMPE10, Makes Milk Pickett Emma 10. Thanks. 

Emma Pickett  22:57

Let's just talk a little bit generally about breastfeeding for babies with Down syndrome. So why is it particularly important that babies who have Down Syndrome get access to their mom's milk or human milk wherever possible? 

Sarah Ojar  23:09

I think twofold reasons. One is obviously there's sort of benefits to the baby which which we know it for any but every baby, it's the same, even more so babies with Down syndrome, all the sort of benefits to the got people with Down syndrome are more prone to issues with constipation and got got issues as they get older. So having that mums meal right from the beginning is just really really, really amazing. All the benefits to brain development, immune system, everything like that is just so so beneficial. And then also there's yes as aspects from the Mother, you know, like mental health, feeling, a sense of pride that you've been able to feed your baby, if that's what you know, what you want to do. And also what a lot of the families that we work with, through the the positive bout Down Syndrome charity is they've said that they found breastfeeding something where they felt like they were doing something. So in a situation where a lot of the time they felt a bit out of control or like, you know, some of them had a shock or surprise when their baby was born. Being able to breastfeed them. Was them feeling a bit of control like they could they could do something so you know, so many benefits even with bonding as well. Everything like that.

Emma Pickett  24:25

Yeah. So obviously you you work with with breastfeeding families and support breastfeeding families and, and obviously you work with families with nurseries who have Down syndrome, I think, can you just take take a couple of minutes just to explain some of the range of different experiences that you see, when families are breastfeeding babies with Down syndrome? What's the sort of range of a sort of typical setup? I mean, will you have babies that can't feed a tool for example, and that's connected to Down syndrome? Or will you have babies who are absolutely absolutely no problem at all? normal tone, no issue at all. What's the sort of range of experiences that you see? 

Sarah Ojar  25:00

Yeah, We see everything. So we have babies that come out and feed and absolutely fine, no problems at all, they just go home and feed and away they go. We also have families that never managed to achieve breastfeeding. And I guess that's the same with a typical baby, you know, it's often to the baby. But it also depends on the family setup, like how much they how important this is to them, you know how much they effort and time they want to put into it. For some people, they, you know, they might give it go, if it doesn't work, no pressure, they'll move on to an alternative. And that's fine. Obviously, we get some that really, really want to, and they just can't manage, you know, the client manager, flu, no fault of their own, just either lack of support, or the baby's just really struggling. We have everything in between I know of a family who was exclusively expressive for six months, and then got the baby on the breast is six months and then continue to feed for another two years. So that's sort of on the later end of establishing feed. And the majority that we work with will probably establish feeding maybe sort of around eight to 12 weeks, if they're struggling in the beginning, it usually is all fine by around eight to 12 weeks. 

Emma Pickett  26:15

Okay, you have a lot more expertise in working family to Down syndrome. And then I have I've only only come across a couple of families that I've worked with alongside other people. One of the things that I came across is is low muscle tone, which I know isn't unusual when it when a baby has Down syndrome. And we used a hold called the dancer hold. Could you maybe explain that for us? For people who are listening who maybe don't know what that means? What does that hold look like? And how might it help a child who's got low muscle tone? 

Sarah Ojar  26:44

Yeah, so the dancer hold is a position where you can use your hands to help support the baby to the breast. So your thumb and forefinger will cut the baby's chin, and the remaining three fingers will be on the underneath of the breast. So you're almost holding the baby to the breast. And that can help with a baby who's got low muscle tone around the jaw or the mouth, it can help with a bit more of an efficient milk transfer.

Emma Pickett  27:11

So you're sort of essentially supporting the chin and putting a little bit of pressure on the chin. So the baby is still moving the chin, but you can maybe massage the chin a little bit as well. And you're maybe being a little bit active. And that process is that a fair way of describing it? 

Sarah Ojar  27:24

Yeah, so it's just giving them a bit of an additional support. So you're not restricting the baby's movements in any way. You're just almost helping them. And actually even just a forefinger under the baby's chin, just to give a bit of stability. So you're not stopping the movement, but you're just giving a bit of Yeah, a bit of stability. What we find is a lot of babies with with Down syndrome, they will leak a lot of milk around from the mouth. A lot of us found we'd have to put up muslin underneath to catch all the additional milk. It's just one of the one of the pitfalls.

Emma Pickett  27:56

Yeah, so so we might be talking about low muscle tone, and what are the challenges might sort of be facing sort of physically, if a baby has Down syndrome?

Sarah Ojar  28:07

I think that like muscle tone is probably one of the more like issues that will affect and it's not just around the jaw and the mouth, it's actually the entire body. So if you think when a baby's got low tone in the core of their body, they're having to focus a lot of their energy on on that support themselves, which takes away from the feed. And so it's really important that we give the baby that as much support as we can also, like mentioned with Zephie being very sleepy. A lot of babies with Down syndrome are born very sleepy and especially the ones that are born sort of around 36 weeks, 37 weeks. We know babies born around that time can be quite sleepy anyway. So especially those with Down syndrome. Those are probably the two main issues.

Emma Pickett  28:51

Yeah, that sleepiness I was talking about that with with Catherine Stagg. We did an episode called the Great pretenders when we talked about those not preterm, but sort of late preterm early term babies and sleepiness sounds like a little thing, but it is can be such a barrier to getting breastfeeding off to a good start. What are some of your top tips for dealing with babies that fall asleep quickly at the breast? 

Sarah Ojar  29:14

I think the usual tips so making sure they're not too warm, little tickle on the feet or the sort of the you know, the neck at the side, and breast compressions, swap insides, all those usual tips when it comes to feeding a row really key with babies with with Down syndrome. It's also the fact that they don't always wake to feed that sleepy that they don't even wake so it's about making sure they're woken regularly and anytime they are awake, offering them a feed as well. 

Emma Pickett  29:48

Yeah. So if we do need to give a baby some supplementation, we've talked already about the using the NG tube, but that's not something that's going to be happening at home ordinarily. What are some of the other way Is the that you see babies being supplemented? If they do need some extra milk? 

Sarah Ojar  30:04

Yeah, so cup, feeding finger feeder we've seen used as well, really it depends on the families and how confident they are. But that is alternative feeding methods. And if they have people supporting them that are confident in that, you know, if it's somebody who's not got access to specialist support, they perhaps will just go straight to a bottle, they will, I will try and encourage pace bottle feeding. But if they do have sort of access to a more specialist group or a lactation consultant, they'll often be more interested in using a cup of finger feeding.

Emma Pickett  30:38

Okay, right. This is me asking a daft question here. So paced bottle feeding does require a baby to be awake and have a bit of in terms of sort of muscle tone. So does that mean with a baby with Down syndrome, sometimes you might need to sort of compromise a little bit. So I remember when I first started to being lactation consultant, everyone was into this thing called the Habermann feeder that then got called a special needs feeder where it was it was like a bottle. But you could you could change the flow. So you could put a bit of a squeeze on it as well. And you could put pressure into the baby, do you see families using sort of specialised bottles or bottles where heavy flow can be controlled a bit more?

Sarah Ojar  31:16

We tend not to see people use those bottles that don't seem to be that popular. And I have seen people sort of look into them and get them from America and things like that. And yeah, with a pace bottle feeding, the baby does need a lot more support. So yeah, you'd have to make sure you're you're supporting the baby. Well with that. And yes, they'll likely be a bit of a compromise with that went battlefield. 

Emma Pickett  31:39

And then you mentioned that some babies with Down syndrome might have heart conditions. Tell me a little bit more about that. And how does that fit alongside a breastfeeding journey? And what kind of support might those families need?

Sarah Ojar  31:52

Yeah, so around a half the babies with Down syndrome, potentially have a heart condition. But a lot of those heart conditions don't require any surgery or anything like that. So babies that do require surgery, they can still breastfeed absolutely fine. What might happen is in the run up to their surgery, they may have to have additional weight put on so I know there's like 40 fires, they can add to to the breast milk or they can have a supplement like a high calorie supplement to get them up to that weight. And also sometimes Breastfeeding can tie them out a bit. If they sort of, sadly, you know, if they're getting close to either a heart failure, or they're just getting tired when they're feeding, those families will express and give a bottle, you know, and once the surgery is out the way they can go back to rebuilding their breastfeeding journey.

Emma Pickett  32:44

Yeah. Okay. So we've talked a bit about how you support other families. Let's just come back to Zephie story tell me about how things progressed with his breastfeeding as he got older.

Sarah Ojar  32:55

Yes. So once we got him home and weaned him off the tube, within about three weeks, we'd got him exclusively breastfeeding, which was just fantastic. It's all I wanted to do. And he fed for two and a half years, until I became pregnant with my twins. And once my milk dried up, he just wasn't interested. He didn't want to feed or anything. He just didn't stop feeding. So yeah, it's really easy weaning journey with him.

Emma Pickett  33:23

Wow. So I can hear your little new one feeding away there. Hello, look a person. So So he went on then for for two and a half years, which is brilliant, fantastic. And that must have made such a difference to him in terms of, you know, development and language skills and motor skills. And you know, obviously, we don't know what exactly looks like without breastfeeding. But with my breastfeeding advocacy hat on, I'm gonna say I imagine that what a gift that was for him. And then when you got pregnant with your twins, presumably he didn't realise why your milk had gone. Was he distressed at all? How did he react emotionally to that ending? 

Sarah Ojar  33:57

No, he wasn't really fazed by it at all. He just, I guess it sort of went gradually over time. And he was always a really big eater, like he tucked away in him really well. So by the time he was, like two and a half, he was, you know, eating loads and he was only really feeding at bedtime and for comfort. And he very quickly just got into a new routine. He's quite adaptable like that. So yeah, it was I was worried but it it turned out absolutely fine. 

Emma Pickett  34:26

Brilliant. Oh, that's that's a lovely happy end. And I know this is not an episode about twins. But how did you get on breastfeeding twins. How did that go?

Sarah Ojar  34:33

That was really good as well. And I was yeah, it was really wanted to breastfeed my twins and thankfully, that worked out. Well. They both had tongue ties as well, which had divided but they weren't really causing the pain. They latch was just so weak, like they were just falling off the breast. But once I got there talentos done. The feed it was really good. And I actually fed them until they were three and that's We seven months. Yeah. When I was pregnant with Jeremiah, this last year, they were inch. So yeah, just before they turned four. So yeah.

Emma Pickett  35:09

Wow, Sarah, you're a bloody champion. I know, this is not what you want the focus of this episode to be about because we're focusing on ending the stereotypes. But but you are amazing. I mean that you must be as I said, You must be an extraordinary peer supporter, because you've just got all this really powerful lived experience. And and that that document you mentioned, the positive about Down syndrome, document lived experience about breastfeeding is a really useful document, I think, for anyone to have a look at who is in that breastfeeding support world or wanting to breastfeed themselves, because it really just talks about how absolutely breastfeeding and Down syndrome are compatible. And I know the theme of World Down Syndrome Day is about ending the stereotypes. And I think you have definitely demonstrated that Zephie age two and a half finally weaning in, in pregnancy was somebody that absolutely could breastfeed could hardly have done a better job. So let's imagine we have a mom who's just given birth to a baby with Down syndrome. And she's maybe worried about breastfeeding, or worried about breastfeeding, not working out, or maybe a mum who in pregnancy has discovered her baby has Down syndrome, and breastfeeding really matters to her. And she's worried about getting that breastfeeding support. What would you want her to know? What would you want that mom to know?

Sarah Ojar  36:20

I'd want her to know that breastfeeding absolutely is possible. But I also don't want her to think that it might, it might automatically be really easy and no different. So I want her to be aware that it may take a little bit longer to establish and that there is support out there. And maybe to you know, if she's in a pregnancy, go and visit your local support groups, let them know that your babies come in and give them a chance to, you know, research some techniques and be prepared and things like that. 

Emma Pickett  36:50

Yeah, yeah. And also, if someone's listening, they're a breastfeeding supporter. And next week, someone walks into their dropping group who has a baby with Down syndrome, what would you want them to know? And you obviously, do you train breastfeeding supporters and help breastfeeding help us learn more about supporting families with Down syndrome? Are there any particular resources you would signpost them to? Or what kind of messages would you want them to have? 

Sarah Ojar  37:11

Yeah, so at the charity, positive route down syndrome, we do have some breastfeeding resources, we have a breastfeeding guide, we also have a really nice book, which is called the lived experience, which has a lot of different experiences of different families, journeys in breastfeeding. I'd also want them to know, you know, go back to basics. So instead of thinking of this baby's got Down syndrome, like what what am I looking for, just look at position and attachment, start at the beginning, look at position attachment. Look at the large look at if there's a tongue tie, look at all the things that you would look with a typical baby and then sort of look at the lowest low muscle tone and the extra support and things like that. The other thing I wanted to mention was babies with Down syndrome, they don't always grow at the same rate as a typical baby. So there is an additional insert for the baby's red book. It's a green insert, and it has some differentiating growth charts. And what we found is sometimes babies who've been plotted on the typical chart look as if they're not putting weight on. So they've been put on feeding plans and supplementation when actually, if they'd been plotted on the Down Syndrome specific chart, they'd be absolutely fine. So I want anybody who's supporting a baby with Down syndrome to be aware of those of those extra charts.

Emma Pickett  38:32

Okay, okay. Well, somebody who has a baby down syndrome have access to specialist health visitor, what's the sort of situation going forward? I mean, obviously, if you've got, you're going home with a feeding tube, and there are feeding complications, you'll have that special specialist nursing team. But do you get extra support postnatally in that phase as well,

Sarah Ojar  38:51

it seems to be very much different all over the country. So some people seem to get assigned a special needs health visitor who I would assume has specialist support. But a lot of the time families are just discharged home without any additional support. Some trusts seem to refer really early to feature land rich for feeding support, but other boroughs and different periods areas don't. So for those families, they're often left on their own or looking at charities that are offering support. 

Emma Pickett  39:26

Yeah, so you mentioned positively about Down syndrome. Did I say that? Right? Is that the charity? Yeah, positive about Down syndrome, positive, positive about Down syndrome. So we'll put a link to that in the show notes. Tell us a bit more about that organisation positive about Down syndrome. 

Sarah Ojar  39:42

Yeah, so they're a charity. They support from pregnancy, all the way up to primary school and beyond. It's expanding constantly. We do a lot of work in the early years and pregnancy and things like that. And they do support for parents but they also do a lot of training and support for medical professionals. They do what lot of training courses for training midwives, health visitors, actual midwives, just for everyone who wants it really. And they do a lot of training around that language and the lived experience what it's like living with Down Syndrome and with a fat with no with a child with Down syndrome. And we also run a training on breastfeeding. So we've run that to a lot of infant feeding leads health visitors, whoever wants it really brilliant.

Emma Pickett  40:26

So that training, is that something that's done face to face? Or can you do it kind of remotely? How does that training work?

Sarah Ojar  40:32

Yeah, we mostly do unzoom at the moment. So I'll do the breastfeeding ones. And we join in on people's team meetings, and we spend an hour chatting about breastfeeding Down syndrome, and have some questions and stuff. And yeah, they go really well. And everyone really, really enjoys them. 

Emma Pickett  40:50

Brilliant. So if somebody wanted to take you up on that, and they were maybe working, you know, with a group of health visitors, they would contact positive about Down syndrome. And there's a contact detail on that page. And they will request your lovely breastfeeding support and infant feeding support, which which sounds brilliant. So what are you doing week, week to week? Sarah, do you go to drop in groups as well? What's your sort of typical week at the moment?

Sarah Ojar  41:12

I go about once a month to local breastfeed group in Lambeth. That's not to do with Down syndrome. That's just my volunteer volunteering that I do. I also take calls on the breastfeeding helpline. And then I spend a lot of my time doing stuff for the charity, emailing people and supporting families. We've got Facebook groups, I support families in there, and writing pieces for different organisations and things like that. 

Emma Pickett  41:38

Brilliant. So as well as the charity, what are some of your other favourite resources? So if somebody is pregnant, they're realising that their baby has Down syndrome, what are some of your favourite resources to signpost them to? Whether it's specifically about breastfeeding or anything else? 

Sarah Ojar  41:53

Yeah, so I always said signpost, people to the BFN and Leche League, and ABN. They all have pages dedicated to Down Syndrome and breastfeeding. So those are always good places as well. 

Emma Pickett  42:07

Cool. I'm just really inspired by what a calm approach you have. You're just getting on with everything. You've got twins, you've got family of five, I feel like I'm completely failing. Because I've only got two children and a dog, you seem to be managing to get on with everything. I'm guessing there have been some tough times who helped you through your tough times, um,

Sarah Ojar  42:29

family, friends, people online, just different support groups, things like that. A lot of the Down Syndrome Community are amazing. And other parents just, yeah, it's a really welcoming community who really helped me. 

Emma Pickett  42:45

When can people find that online community through the charity if they want to sort of join a facebook group or Whatsapp group has that as an option? 

Sarah Ojar  42:52

Absolutely, yes, we have Facebook groups within the charity for pregnancy, parents preschool school, we got the whole the whole thing which you know, it's really nice people can move up through the groups as their child gets older. And it's just amazing support.

Emma Pickett  43:08

Brilliant. So if somebody was going to remember just one thing from our conversation today about breastfeeding and Down syndrome, what would you want them to remember? What do you want your headline to be?

Sarah Ojar  43:18

I think I'd want them to remember that babies with Down syndrome can breastfeed and should be given the opportunity. That's that's the key thing. You know, we talk about inclusion. And a lot of people think about inclusion around the schools and nurseries, but actually inclusion starts from day one, it starts from when the baby starts from before, what we don't want is families, hearing from medical professionals, them saying, Oh, don't even bother to try and breastfeeding because it's not going to work out. And that's what we've found people have had in the past. And what we've learned is that people should be trying, you know, if they want to feed their baby, they've got an absolute chance of doing that. So we shouldn't be putting them off. We should be encouraging that.

Emma Pickett  43:58

Absolutely. And it sounds like you are doing a great job to support and encourage people. Sarah, thank you so much for your time today. I really, really appreciate it. And yeah, please do check out positive about Down syndrome. Link is in the show notes and inform yourself. So you can be someone who offers that support in the community. It's not always up to other people to do that. We make the difference ourselves. Thank you Sarah, for your time today.

Sarah Ojar  44:20

Thank you.

Emma Pickett  44:26

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