Think:Health cultivates and articulates the best in health research and news.
The following episode, which aired on Sunday 7 August 2016, features:
- research into the rate babies are receiving non-human milk or formula, and how parents find information to make decisions (00:51); and
- one man's experience of living with tuberculosis (TB), which affects one in three people worldwide (16:44).
Academic guests:
-
Jessica Appleton - PHD Candidate in the UTS Faculty of Health
-
Dr Paul Mason - Research Fellow in the Centre for Values, Ethics and the Law in Medicine at the University of Sydney
Host/s:
- Ninah Kopel, 2ser
- Sam King, 2ser
START OF TRANSCRIPT
Ninah Kopel: Hello, I’m Ninah Kopel, and this is Think:Health. Today on the show:
Hamish: So many people, the moment after you tell them, go, “Are you contagious? Wait, we’ve shared a bunch of drinks in the past week!” The ones who knew something about it, they’d know it’s in your lungs and it’s contagious as hell.
Ninah Kopel: We talk about the world’s number 1 infectious killer.
[Music plays]
Ninah Kopel: But first, when it comes to breastfeeding, the consensus is in. Medical professionals in Australia and around the world say that breastfeeding helps baby’s nutrition and strengthens their immunity. Both the World Health Organisation and UNICEF recommend that babies be exclusively breastfed for the first six months of their lives, and that breastfeeding should continue after that with the appropriate introduction of solids. But sometimes, that just isn’t possible.
[Sombre music plays]
Tamsin: I felt like a total failure when we had to add formula to his diet, so much so that when we got home, I remember actually telling my husband, this is the “tin of failure” – like the tin of formula was the “tin of failure” sitting on our bench at home! And every time I looked at it for about four days I would just cry.
Ninah Kopel: This is Tamsin. She’s a working Mum to little Ari, who’s crawling around and playing as we sit on her couch in Sydney’s Inner West. If you hear any little people sounds as Tamsin shares her story, that’s why.
Tamsin: So my son Ari was born last August, and when he was born he was a very tiny baby, so he was born at 2.4kg, which is right on the very cusp of the doctors being worried about the size of your baby, even though he was full-term.
Ninah Kopel: On average, babies at this age gain about 200grams a week, but baby Ari was gaining less than 100g a week. And that had Tamsin worried.
Tamsin: So, we ended up on this whirlwind of why was he not gaining weight, what can we do to fix this… you know, this big sort of health system whirlwind, throughout which we had really good experiences with the health system, but we ended up trying a whole lot of different things. So as well as breastfeeding, I ended up breast pumping, so as well as being breastfed, Ari would then get a breast milk top-up, straight after every breastfeed. We did that for a couple of weeks and he still wasn’t gaining weight. We saw a lactation consultant… you know, the cycle went on, and in the end, we ended up doing what I now know is a system called mix feeding, where Ari was both breastfed and received pumped breast milk and drank formula.
Ninah Kopel: But this wasn’t easy for Tamsin to come to terms with. She had spent her whole pregnancy, and the first weeks of Ari’s life convinced that breastfeeding was the best way to go – that breastfeeding was the way that she would ensure her son was healthy. But, the situation was out of her control.
[Music plays]
Tamsin: And making up the bottles – it really upset me. I had to get my Mum and my husband to give it to Ari. It was extremely upsetting, and looking back, that was the part when it would have been really good to have support from people. I mean, my family and friends were all incredibly supportive about it. They were saying, “Look, you’re doing the right thing, you’re feeding your baby.” None of the nurses I saw were negative or told me it was the wrong thing, but there was that sort of underlying current, that because it’d never been spoken about either in pre or postnatal discussions, that this was the wrong thing to be doing, or the wrong scenario that I’d sort of found myself in. I suppose it was also never told to me that, you know what, you can be a successful mixed feeder. So, just because your baby has to have some formula, doesn’t mean that that’s the end of breastfeeding. You can do both and you can do both successfully for a long time, but we never got that information from people.
Ninah Kopel: This lack of information, in a way, is kind of understandable. Doctors and other health experts advise women during pregnancy to emphasise the importance of breastfeeding, because science shows that for babies, it’s just better. They also know it isn’t always easy at first to breastfeed, and maybe they’re trying to encourage mothers to persist and not turn to formula as soon as things get a bit hard. But when Tamsin suddenly had to change her plans and work out how to provide her baby with a bottle, she didn’t really know where to start.
Tamsin: …so much so that I didn’t even know how to make a bottle. When I was sort of sent home from the clinic that first day, I had this bottle of formula, I had a bottle but I didn’t know the temperature it was supposed to be, I didn’t know the best way to make it… and look, it ended up working really well for us. Ari is now really healthy. He gained weight after starting to have the formula. He’s a really happy, healthy baby, but it was really hard to get information about it and to have people saying it’s OK – that this is what you have to do.
[Music plays]
Jessica Appleton: I’m Jessica Appleton. I’m a PhD candidate with the Faculty of Health at UTS.
Ninah Kopel: Jessica is interested in new mums like Tamsin who for whatever reason end up using formula to feed their babies.
Jessica Appleton: I did a little bit of research before I came to my PhD and I looked at how parents were talking using online discussion forums. So that was my Honours work here at UTS, and on it, I noticed there was this contention between breast feeding and formula feeding, and it seemed like a pretty interesting topic to talk about. And I was also looking at obesity prevention. So those two interests kind of came together, and I looked at the research that we have around infant feeding and obesity prevention, and that formula fed babies may be at higher risk of these things that might then lead to later risk of obesity, and so I wanted to know why that might be. So I started looking at it, and there’s not a lot of research around parents’ use of formula.
Ninah Kopel: So what research are you doing to try and fill that gap?
Jessica Appleton: So, I’m trying to fill the gap, but probably only doing a small amount towards it (laughs). I am looking at how parents use formula in the first nine months of life. So, we’ve done a questionnaire and asked parents when there babies were between zero and three months and then at six months and then at nine months, and so we have some information about how they use formula. I’m currently analysing that data, so I don’t have any results to share with you today, but I will do.
Ninah Kopel: You’ll get there.
Jessica Appleton: Yeah. And then the other thing is I’m talking to parents about how they use formula and they’re experience of using it, because the other big part of my PhD work was not only how they’re using it, by why they do it that way and where they get that information from, what kind of sources of information they use, because there’s evidence when we look at this that there is actually maybe not so much information for these parents.
Ninah Kopel: And that’s what Tamsin was getting at, right?
Tamsin: It was really hard to get information about it and to have people saying, you know what, it’s OK, that this is what you have to do.
Ninah Kopel: So what information is available? I asked Jessica.
[To Jessica] So you said you started off on these online forums. Is that where parents are getting a lot of their information?
Jessica Appleton: Yes, sometimes. And how they actually use that is a bit interesting. I’m not actually sure I know how parents use it, because I’ve done interviews with the Mums, and they were talking about using online forums, and I was trying to ascertain from them – how do you actually use that information? And they were like, “You know, I might look at this and look at that and then maybe look over at this bit information and then make up my own mind…” So, it’s really interesting how they actually incorporate that information into what they actually do with their child.
Ninah Kopel: How do they make that decision? It seems like such a big decision to make a decision based on advice from strangers on an online forum who probably don’t have any online medical experience…
Jessica Appleton: Yeah, well, I can’t actually speak to how they do that because that’s kind of another question which would be really interesting to research – I suppose maybe at a later date I’ll look at that. I think that they seem to incorporate what they’ve been told by some authority source. Again, it depends on how they perceive that, so whether it’s their family or friends, their Mum, their child health nurse, and their paediatrician… yeah, it’s like lots of health decisions that we make. It all depends on what we presume is the best information.
Ninah Kopel: I’m really curious about these forums and this idea that parents are turning to them for advice on how to raise their babies. To see what goes on, I joined one and found a thread that I’m going to recreate for you.
[Keyboard typing sound effects]
Forum user 1: Whilst I’m pregnant with my fourth, I’m not very experienced with breast-feeding. I gave up quickly due to exhaustion and pain. I have always been told you must choose one or the other. Is it possible to breast feed and bottle-feed when I’m needing a break? That’s going to happen because I’m going back to work and to study very quickly. I have a lot of helpers however, and my Mum’s trying to convince me to breastfeed and supplement with bottle if needed. She’s a mother craft nurse, though I know the hospital will be against this. Your views please.
Ninah Kopel: And these are the comments that this Mum got in response:
[Keyboard typing sound effects]
Forum user 2: There is no option to exclusively breastfeed as you are planning to go back to work? What do you mean by this? Plenty of women exclusively breastfeed even after returning to work.
Forum user 3: You can. My only advice would be to do all that you can to establish effective breastfeeding first, so you can maximise your supply, then gradually introduce a bottle after a month or six weeks.
Forum user 4: My third was breastfed almost exclusively for six to eight months, as he refused a bottle. I tried and tried, but he just wanted breast milk.
Ninah Kopel: But does this tension between formula users and breast feeders exist only online?
Tamsin: When I first sort of pulled out a bottle in public instead of whipping out the boob, it was something… I was looking around thinking, “Are people judging me? Am I doing the wrong thing?” Especially because I live in sort of the inner West of Sydney, which is a little bit, more of an alternative community – people are very into the breastfeeding, which I think is great – I wanted to be a breast feeder. But I think at the end of the day, if you’ve got a hungry baby, or if you’ve got a baby that is not doing what it should be doing like in our scenario, you’ll almost do anything at that point to feed your baby.
Jessica Appleton: There’s been a bit of research over the last couple of years talking to parents who don’t breastfeed, and there’s a really strong theme about feeling guilty about not breastfeeding, feeling less supported by health professionals and other structures around and feeling judged by society. So, I was really interested and surprised that some of the parents I spoke to actually had experiences where they had felt actually judged in a public place, with people actually coming up to them and saying things about using formula, or saying, “You know you should be breastfeeding”. You know, strangers and also extended family and things like that.
Ninah Kopel: According to the 2010 Australian National Breastfeeding Survey, 55% of children at 6 months of age had received nonhuman milk or formula. So while women do seem to feel pressure to breastfeed, using formula seems to be quite common. But is that something we should be concerned about? Jessica Appleton, PhD candidate at the University of Technology Sydney, says that there are some risks involved.
Jessica Appleton: My interest in looking at formula is as a potential risk factor for later overweight and obesity. And another risk factor is rapid weight gain in infancy, so we know that infants that have rapid weight gain, which is a really specific term that we use, which is about how rapidly a baby puts on weight over the first kind of year to two years. We measure baby’s growth on growth percentile charts, and we usually expect a baby to grow along the percentile chart that they start with. So their birth weight may be sitting on the 50th percentile, and we usually expect their growth to maintain around that kind of line. Rapid weight gain is when they start having that increasing weight that then crosses percentile lines, so they’ll go from the 50th, to the 60th, to the 70th, within the first twelve months, and sometimes people will look at the first two years at the growth trajectories in that time. So, what we do know from research is that babies who use formula are more likely to have that rapid weight gain. So that made me think, well why is that? What is it about formula feeding that might lead to this rapid weight gain? And like I said, we don’t know a lot about people using formula, so that’s part of the problem because we can’t actually articulate how people are using it in general anyway. But if you do look at using formula, there might be a couple of candidate practices that might then increase the risk. So a really obvious one would be feeding with bigger bottles, or feeding the baby more than they might need. Another one that there is a bit of research around is the protein content in formulas. So, formula with high protein content has been shown to lead to more rapid weight gain. What I’m going to look at is, what evidence is there around these practices so that we could advise the best practices for parents to use formula in the best way, to reduce the chances of rapid weight gain.
Ninah Kopel: So it would be a matter of saying which formula, the best times to feed, the best amount, as opposed to just saying, “Don’t use it. It’s bad.”
Jessica Appleton: Well yeah, I suppose the first point with infant feeding guidelines is breastfeeding is the first option, but if you’re not breastfeeding, what’s the best way to feed formula is where I’m coming from –yeah, so it might not be the times. The main thing would be to feed to infant cues, so their own hunger and satiety, listening to the baby when their actually full and when they’re hungry, and also being attentive in how you feed. So one of the things that people often note – the difference between breastfeeding and bottle feeding, or using formula in a bottle, is that when you feed with a bottle, the parent or the carer who is feeding the bottle has a lot more control over how much the baby drinks, so we wonder whether that actually then influences the baby to drink more than they might if they didn’t have that control.
Ninah Kopel: So there’s just this natural control going on with breastfeeding where the mother is producing the right amount of food?
Jessica Appleton: Yeah, and with breastfeeding, the baby has to continue to suckle to get the milk out of the breast, whereas with a bottle, there’s that flow from the teet.
Ninah Kopel: So it’s harder to regulate…
Jessica Appleton: Yeah, so it’s harder to regulate for the infant and for the parent.
[Music plays]
Ninah Kopel: But for Tamsin and baby Ari, formula was exactly what the doctor ordered.
[To Tamsin] What would you tell someone who’s pregnant now to expect? How would you prepare them? What would your advice be?
Tamsin: Well, first of all I’d say try really hard to breastfeed, because it was wonderful. Not only was it beneficial for Ari, it was great for our bonding as well, and even though I couldn’t do it full time, I loved breastfeeding, so I’d say definitely try and keep trying. But also, do not feel like a failure if it doesn’t work out for you. And also, you can mix feed really successfully. Having a bottle or two of formula a day and the rest of the feeding as breastfeeding – we did that for months. And I wish that was what someone had told me – that doing both is totally do-able and OK – that it’s not either all breast or all formula, but it’s totally possible to mix it and to do that really successfully.
Ninah Kopel: Working Mum Tamsin Lloyd ending that story.
[Music plays]
Male: You’re listening to Think:Health on 2ser 107.3
Ninah Kopel: How many people around the world do you think have tuberculosis right now? Give it a guess. 1 in 5 maybe? 1 in 10? Turns out the actual figure is higher than you might think. It’s actually 1 in 3. Tuberculosis is the world’s number 1 infectious killer and yet we rarely hear about it. Our producer Sam King wanted to find out what life was like for people who have TB, lurking inactive in their lung tissue.
Hamish: I went to a party. One of my friends found out and was under the impression it was common knowledge. I think it was about two hours after they found out that everyone at the party knew. That sucked. That really sucked because up until then it was on the down low – I didn’t want people to know about it. Yeah, I guess it got out and I wasn’t sure what I could do.
Sam King: OK. So, I’m just going to jump in here and break the ice. This is a friend of mine – we’ll call him Hamish. He has tuberculosis.
[Music plays, fades down]
Hamish: After that I figured, I’m not going to keep it a secret I guess. Most people who I know, know that I have it. I don’t tell everyone that I work with – that’s sort of the one thing I don’t tell people. Everyone I’m in a plutonic or any other relationship, I usually share it. I didn’t actually know what the hell tuberculosis was until I actually had it in my lungs.
Sam King: And neither did I really, until speaking with Hamish. So let’s take a moment to clear that up. Tuberculosis is caused by a bacterial species known as mycobacterium tuberculosis. One in three people in the world are infected with mycobacterium tuberculosis. But here’s the thing – there’s a world of difference between being infected with this bacterium and being sick with tuberculosis.
Paul Mason: So, you can become infected with tuberculosis but you don’t become sick because you’re very well nourished, you’re eating a healthy diet, you get enough sleep, you’re not living in overcrowded settings, you’re not living in poverty.
Sam King: This is Dr Paul Mason. He’s done extensive work with tuberculosis patients around the world. I’ll let him take it from here.
Paul Mason: Now, if you’re not living with those risk factors, then the likelihood of becoming sick with tuberculosis is lower. The number of people who get tuberculosis each year is over 9.6 million. The good news is, it’s a curable disease, so most of those cases are cured. Sadly, over 1.5 million people still die from the disease…
Sam King: Which today makes tuberculosis the world’s leading infectious killer. You may have heard of the symptoms – coughing, night sweats, abscesses in the lungs…
Paul Mason: Don’t forget though, not all forms of tuberculosis are lung infections.
Sam King: In up to 20% of active cases, the infection spreads beyond the lungs, which is known as extra-pulmonary tuberculosis. It’s a horrible way to go, but what’s interesting is how it only affects a very small minority of the people that are actually infected with the bacterium. So, I wanted to ask, what is life like for the one in three people who are living with a latent tuberculosis infection right now?
Paul Mason: The stigma of tuberculosis, depending on the location, can be very harsh.
Hamish: People have actually told me they got nervous, and so many people, the moment after you tell them, go, “Wait, are you contagious? We’ve shared a bunch of drinks in the past week”. And so they get instantly terrified of that. That’s a big one – drinks. Everyone thought, “Oh, that’s contagious as hell.” The ones who knew something about it, they’d know it’s in your lungs and it’s contagious as hell.
Sam King: What do you do to manage it?
Hamish: Well, at the moment, nothing, which shocked me.
Sam King: So there are no regular check-ups?
Hamish: Nope. None locked in. It’s OK. I go out into the world and let’s hope nothing happens.
Sam King: How often do you get checked up?
Hamish: I’ve been probably twice in the past year.
Sam King: When was the last time?
Hamish: Six months ago, yeah, a while ago.
Sam King: Wow.
Hamish: ...which I was really panicky about at first. So after you find out, they get you some chest X-rays and get you on antibiotics and I think Vitamin B... it was a long time ago… but you need to take about 4 pills a day, spread out through the day.
Sam King: And that’s while they’re trying to figure out if it’s active?
Hamish: They know straight away if it’s active or not. They just check the chest X-ray and say, “It’s not active”, so you don’t need to be locked away or anything. Here are your vitamins and antibiotics, take however many a day for six months. So six months, I got really good at swallowing pills and having my blood taken, because once a month during those six months, you go in, get your blood taken, make sure you’re still OK, you’re not reacting badly to the medication, which apparently has a fair few side effects pretty commonly. After that, you get to the end and, they say, “You’re fine. Go live your life.” I remember at first every time I’d get a slight cold or anything like that or I had a bit of a cough, you know, I’d run into the hospital and say, “It’s activated, it’s activated! Lock me down, get me some of the good meds…” The way they brush it off in a way is reassuring but also worrying, because they’d go, “Do you have night sweats,” and they’d list off a number of other symptoms, and I’d say no, and they’d say, “Nope, you don’t have it. Trust me, you’ll know when you do.”
[Music plays]
Hamish: That’s when I also tell people, it’s not like the common cold. I mean it does kill however many people in the world – it’s not a slight tickle in the throat. When it activates to tuberculosis, it’s a different kettle of fish…
Sam King: You feel confident being in Australia though?
Hamish: I feel very confident being in Australia. As I say, the A) treatment and B) service that I’ve been provided has been above and beyond. I was living at uni at the time, had very little money and it was all taken care of, all regular check-ups… I didn’t pay a single dime for the medication, the X-rays, everything… it was great. The whole system was perfect as far as I’m concerned. I was blown away. It made something that should have been really difficult really easy.
Sam King: Of course, it’s a different story in developing countries where TB is much more prevalent and treatment is much harder to come by. Dr Mason worked with patients in Vietnam, where there’s no safety net, and the stigma is much more harsh.
Paul Mason: There is one TB patient who sticks in my mind probably because it was the first TB patient that I interviewed. He was a lottery ticket seller. This is a lottery run by the government so that people who are poor and have no other means of income can have some form of income. So he would get 10% commission, which was about $1000 Vietnamese Dong, or 5 cents. And in any given day, he would sell between 30-50 tickets, which meant he was living on $1.50-$2.50 a day. And that covers your essentials. That covers some rise and it covers maybe something to go with that – it doesn’t cover much else. So, he eventually became sick with tuberculosis and he lost so much weight that this person, when I met him, was 50kg, which is already quite light for a grown man. But when he was at his sickest, he was 30kg.
Sam King: 30? Wow.
Paul Mason: 30kg. So, he and his wife moved apart for a while. He didn’t want her to become sick, so isolation was a very strong part of the stigma. People can be shunned very abruptly, told not to share social spaces. They’ll be cut off from going drinking with the boys or going out playing cars or even selling your tickets locally.
[Music plays]
Paul Mason: What amazed me was his perseverance and his tenacity in adhering to tuberculosis treatment, no matter how hard it became for him. And the side effects of the drugs were really hard. He couldn’t sell his tickets locally, because people were afraid that they would get sick, which was a false belief, but nonetheless, because of the lack of public education, people didn’t want to touch anything he had touched, people didn’t want to go near him… so he had to walk even further every day to sell these lottery tickets, and of course, his income was then affected by that, and his nutrition wouldn’t have been very good. And he had no other means of addressing these shortfalls in his life. These people who are under conditions of unnecessary stress. Their fall back system or their safety net is not as wide.
Sam King: And in some cases non-existent.
Paul Mason: Yeah, so something like tuberculosis can just really knock them out of the water.
Sam King: What happened to him?
Paul Mason: He actually got better, which was incredible because of all the hurdles that he had to overcome to get better… and his treatment was incredible. So, I met him towards the end of his treatment, and he was told to get an X-ray to find out whether or not his treatment had been successful. But he couldn’t afford the X-ray. It cost him $8, so 160,000 Vietnamese Dong to get this X-ray, but he couldn’t afford it, because he has no money to put away... to save money. He’s already asked friends and family for money, so he can’t ask them again because they don’t have a lot of money. When I met him, we organised a free X-ray for him, you know, he’d already gone through the treatment. When I met him after he’d had this X-ray in his village, he was a completely different person to the person I’d met when I first met him, because he was standing upright, he was happy, he was able to sell his tickets locally, he was more comfortable being around people, and he also had this doctor’s certificate to say, “Look! I’m better, you don’t have to be afraid.” It completely transformed his life just having a certificate saying that he’s better. And this is someone who was already under treatment who was not infectious. What he needed, and what was so simple for me to organise for him was this free X-ray. When I saw how easy it is to help one person, I’m just thinking, why aren’t we doing more? Why are people at the end of their treatment still suffering the social consequences of this disease – the stigma of this disease – even though they’ve finished or almost finished treatment?
Sam King: And if this is a treatable condition that almost a third of us carry, why is there so much social stigma in the first place? Could it be because it’s just not that well understood? Because people don’t really know how you get it, who you can get it from, how it’s transferred, how widespread it really is? I mean, without wanting tom make assumptions, you probably though Hamish picked it up overseas while travelling, right?
Hamish: I was working at an Indian restaurant out in Penrith, and got a letter in the mail saying someone with tuberculosis has identified you as someone they’ve been in contact with – come in, get checked, we’ll make sure you’re OK. Whenever I tell anyone, you know, I got it from an Indian restaurant, they say, “Oh OK, it was someone who got it in India, brought it back and then you got it from them.” It could’ve been… I mean it’s all anonymous and the hospital is not allowed to tell me who gave it to me. I have a pretty good hunch. There was someone who was coughing a lot, quite unhealthy. I’m pretty sure I know who it was, again, just suspicion, but she’s the only person I can remember coughing and it’s the person who I worked in the closest proximity to… And she was Australian born and bred, like several generations. It was tuberculosis from Australia.
Ninah Kopel: Sam King with that story.
Don’t forget, if you’d like to find out more about anything you’ve heard today, you can visit us at 2ser.com/thinkhealth. We’re also available on demand. Just search for “Think:Health” in your favourite podcast app. Please remember that journalists are not doctors. If we’ve made you ask questions, go and see your GP. This show was produced with the assistance of the University of Technology Sydney and 2ser. I’m Ninah Kopel, thanks for having me the past few weeks. Next week, Ellen Leabeater will be back to bring you more in Health research and news.
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