Vaccinations and extremely premature babies
Think:Health cultivates and articulates the best in health research and news.
The following episode, which aired on Sunday 7 February 2016, features:
- the decisions around saving extremely premature babies (00:51); and
- what influences 'attachment parents' when they decide whether or not to vaccinate (17:54).
Academic guests:
- Dr Neera Bhatia - School of Law, Deakin University in Melbourne
- Dr Janet Green - Senior Lecturer and Researcher at the UTS Faculty of Health
- Jon Wardle - UTS Faculty of Health
Host/s:
- Ellen Leabeater, 2ser
- Jake Morcom, 2ser
[Introduction]
Ellen Leabeater: Hi, I’m Ellen Leabeater. Today on the show what influences attachment parents when deciding whether or not to vaccinate? Is it the GP? Other parents? The Australian Vaccination Sceptics Network? We’ll find out a little later on. But first on the program…
Melissa: And they then proceeded to tell me that when my baby did arrive that there was no saving her. That she could pass away in my arms or I could leave her in her cot and let her pass away in her cot.
Ellen Leabeater: For new parents, often the biggest decision to make is whether to paint your child’s room a gender neutral colour or go with blue or pink. Choosing whether your baby dies in your arms or in their cot is something that only happens in a nightmare. Unfortunately for parents of babies born extremely prematurely this is but one of the difficult questions that must be decided in a turbulent time.
Melissa: It’s so hard for someone to tell you that. You know you’ve carried this baby for five months and you’ve felt little niggles and you’ve felt her starting to kick. You’ve seen your ultrasound images of her moving around. It’s a really hard thing to take in because, A, it’s not fair and, B, you’ve already got this bond with this person who’s growing inside of you.
Ellen Leabeater: This is Melissa. Finding out she was pregnant was a surprise for her and her partner. She’d had a few miscarriages and was trying to lose weight. Only those last few kilos wouldn’t shift.
Melissa: My partner and I have been together for 11 years and we had quite a few miscarriages over the time that we’ve been together. We weren’t trying. I was trying to lose weight because I have polycystic ovarian syndrome so that can interfere with your fertility. I was losing weight and I was trying to lose the last five kilos of my 15 kilo goal and I found it really hard. It wasn’t coming off and I didn’t know why. I went to the shops one day to buy a piece of meat and found myself gagging in the meat aisle. I went and took a pregnancy test and it was positive. We were just really shocked.
Ellen Leabeater: Melissa had a normal pregnancy. Her 20-week scan was very positive. At 22 weeks Melissa was involved in a near miss and her otherwise normal pregnancy took a turn for the worse.
Melissa: I was going to a meeting with my coordinator for work. We had a near car accident. I had to slam my breaks on going from 70 kilometres an hour because five or six cars in front of my had slammed their breaks on. The impact from that I later on found out is what brought on my early onset labour.
Ellen Leabeater: Nobody was harmed in the almost accident and Melissa thought nothing of it. A few days later she noticed she was bleeding heavily and took herself to hospital. It was Monday and she was 22 weeks and six days pregnant.
Melissa: They pretty much put the speculum in and said okay and pulled it out and then began to tell me not to worry but I’m three to four centimetres dilated. The baby’s head is facing down. She’s got lots of hair. The amniotic sac is bulging out of my cervix and I was pretty much going to have the baby that day.
Ellen Leabeater: When it comes to extremely premature babies an extra day in the womb can make all the difference. An extra week even more so. The longer the baby spends in its mother’s womb the more likely it is to survive as you would expect. Melissa’s hospital said they weren’t equipped to deliver a baby at 22 weeks and six days’ gestation. As it currently stands, there are no standard Australian guidelines on when to save an extremely premature baby.
Dr Neera Bhatia: Hi. My name is Dr Neera Bhatia. I’m from the school of law at Deakin University in Melbourne.
Ellen Leabeater: As Dr Bhatia explains when a hospital resuscitates an extreme prem is up to them and the experience of the doctor treating.
Dr Neera Bhatia: The current clinical guidelines that we have in Australia vary from hospital to hospital. They are essentially dependent on the doctor that is treating at the time. There has been some discussion in New South Wales by a consensus of doctors where they have spoken about a suggested timeframe where comfort care should be given and they’ve discussed 23 weeks and six days. But across Australia we don’t have any uniform guidelines as such. They vary as I said to hospital to hospital and decisions are essentially made on a case by case basis.
Ellen Leabeater: Ruby held on for one more day bringing her gestation to 23 weeks. It was now Tuesday.
Melissa: So we pleaded, as you do when you’re desperate and you have no other choice and life’s taken over and things go out of your control, your plead. You beg and you plead. It wasn’t until the next day because I had to stay at my local hospital overnight. It wasn’t until the next day that I got up to go to the toilet and sneezed and contractions began.
Ellen Leabeater: Melissa’s local hospital called another hospital more equipped to deal with a now 23 weeker. She was there within half an hour and given drugs to stop her labour progressing.
Melissa: That really helped and gave her a few more extra days in me.
Ellen Leabeater: The next evening she was in labour again. It was Wednesday and Ruby was 23 weeks and one day.
Melissa: It wasn’t until the Wednesday night that I started to go into labour again. But the nursing staff at this hospital didn’t think that I was in labour and thought it was Braxton Hicks.
Ellen Leabeater: Is that Ruby I can hear in the background?
Melissa: Yes. She’s looking at me like why aren’t you talking to me?
Ellen Leabeater: If you haven’t already noticed her gurgling away during this story, you can rest easy because we do have a happy ending. On the Thursday, Ruby was born. She was 23 weeks and two days, or to use the micro prem lingo, 23 and two. A normal pregnancy lasts 37 to 42 weeks. Ruby spent the next four months in hospital and left the day after what would have been her due date.
Melissa: She is a little miracle.
Ellen Leabeater: It’s a story that doesn’t always have a happy ending especially for a 23 weeker. Ruby was given a five per cent chance of survival once she was in the real world and that was if she survived labour. If she did survive she was also likely to have a disability. More than half of babies born at 23 weeks will have a disability.
Melissa: They told us what the risks were for the birth, for me, for the baby, for her life later on. Risks of health. They told us that there was a high chance that she would have cerebral palsy or brain bleeds, learning difficulties, lung issues, hearing and eye issues. They were quite high on the list.
Ellen Leabeater: This is why saving extremely premature babies gets a bit hairy. With the possibility of a life in pain being so high, should these tiny infants be saved? Who should be the one to make the decision.
Dr Janet Green: This whole area is a huge minefield.
Ellen Leabeater: Dr Janet Green is a senior researcher in the faculty health at UTS. She has recently released a paper looking at how nurses perceive the quality of life of these extremely premature babies.
Dr Janet Green: Quality of life is, it’s a very subjective term and what might be quality to one person may not necessarily be quality to another. What you’ll find is that most quality of life determinations are often made by people who are not living that life. How do we define quality? Is it somebody who has the use of their brain? Is it somebody who is mobile? In my research, for example, the nurses talked about the quality of life for the parents being just as important as the quality of life for the surviving baby.
Ellen Leabeater: In Dr Green’s research quality of life was more than just the quality of life for the child but the family too. Nurses also spoke about the differences between a physical and cognitive disability.
Dr Janet Green: They felt that a cognitive disability was worse than a physical disability because people, and they gave lots of example. So people with a physical disability are still able to do things. They may need some help and that kind of thing, but they felt that the brain was of particular significance and that when it was damaged there was likely to be a worse outcome.
Ellen Leabeater: The real issue is doctors don’t know the true extent of the disability for several years. All you can do is guess.
Dr Janet Green: Most of the major disabilities will have arrived before one year of age. But you’re absolutely right. The uncertainty is what certainly gets to a lot of nurses. I think that the best available evidence is used and given to the parents and they make the decision about what they think is in the best interest of their child.
Ellen Leabeater: In Melissa’s experience, she says that the medical staff had numerous conversations with her about whether and when to continue or withdraw treatment for Ruby.
Melissa: They did tell us of everything bad that could happen. We did talk about her quality of life and what our limits were. We made plans. Every day we revisited those plans until she was born on the quality of life for her and myself as well. I’m glad that it didn’t come to that.
Ellen Leabeater: Melissa says even if Ruby was going to have a disability she wouldn’t have withdrawn treatment.
Melissa: I know myself that even if they had turned around to me and said that okay your baby is going to have cerebral palsy, I don’t think that I would have been able to cease treatment. I don’t know. How do you do that?
Ellen Leabeater: As we mentioned earlier, there are no national guidelines helping doctors to decide whether to continue or withdraw treatment of extreme prems. Dr Green explains that there are some things that are considered but it is very much on a case by case basis.
Dr Janet Green: There are things that are taken into account. For example, birth weight, gestation, the health of the mother because all of those things actually impact on the outcome. They scan the brain to see if there’s any damage. They look at lung damage. The problem with babies of extreme prematurity is that they’re born at a time when their organs are all present but they need a lot more maturation. It’s during that time that the very technology designed to save them can damage. A clinical guideline is not terribly helpful when you are dealing with somebody’s much wanted baby. But it should be every baby, every circumstance should be taken on an individual basis rather than blanket rules about extremely premature babies in general.
Ellen Leabeater: But what happens when a parent thinks treatment should continue and a doctor doesn’t? How about the other way around when a parent doesn’t want to continue treating the baby? This is where the courts step in as Dr Bhatia explains.
Dr Neera Bhatia: Talk about Australian courts, they seek a lot of guidance from the UK judgements but the courts will consider the medical prognosis and they look at the medical opinion. The courts will eventually determine under their parens patriae jurisdiction, as being the parent of the nation, what is ultimately in the best interests of that particular infant.
The central questions that the courts will consider are things such as what is the quality of life going to be for that extremely premature infant? What quality of life will he or she have? Would further treatment be futile for that particular infant? What would be the burdens of treatment? Or what would the benefits of treatment be?
Ellen Leabeater: In addition to pushing for a national framework on how to treat extreme prems, Dr Bhatia thinks we should be having a conversation about whether we should be resuscitating at all in some cases.
Dr Neera Bhatia: The fact that we have an aging population and we have finite limited public resources and where we do have an extremely premature infant that we push for aggressive treatment to be given to that child and this child survives with extremely debilitating disabilities, it’s the parents that then have to take that child home and care for that child.
It’s also the long term effect that that will have on the parents and other siblings in the wider family. As well as society and community in terms of raising that child and really caring for that child. They’re questions that we really need to be asking. They’re uncomfortable questions but I think they’re definitely questions that we need to start asking.
Ellen Leabeater: It’s definitely a very interesting concept because I’m sure a lot of parents who have children with disabilities they say it’s actually quite a rewarding experience to have a child with a disability.
Dr Neera Bhatia: Absolutely. I do not take that away from anybody. I think that a disability in no way is something that is a bad thing or a thing that should be shunned. I do however think that in an aging population we do need to consider the resources in giving that child, be it a disabled child, a life that where they are given the utmost care and the utmost services and the best services that they should be given and provided with. I question whether we can do that.
Ellen Leabeater: As for Ruby, Melissa realises how lucky she is for her to survive. They watched many extreme prems die including a little boy who died after 11 days. He was the same age as Ruby. But for now Ruby is at home. Still on a feeding and oxygen tube but she’s getting stronger every day.
Melissa: She’s working on coming off the oxygen. We’re up to three to four hours off a day. It’s just a process and it’s just a matter of time. We’re hoping that she’s going to be a normal, happy, healthy child.
Ellen Leabeater: If you would like to hear Melissa’s full story as well as a discussion of Dr Green’s full research paper you can head to our website at 2SER.com/thinkhealth. Coming up next, the marketing strategies of the pro and anti-vaccination camps. Which one is more likely to get attachment parents over the line?
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Ellen Leabeater: Hi. You’re listening to Think Health. Ellen Leabeater with you. Now, for the majority of Australians vaccinations are a no brainer. But for a small percentage of the population there are still questions to be answered about the benefits and risks of getting a jab. At the beginning of this year the No Jab No Pay legislation came into force preventing parents from collecting a range of government benefits if their child isn’t fully vaccinated.
But is this scheme really going to catch all those who don’t vaccinate. Jon Wardle is from the University of Technology Sydney, Faculty of Health. He’s been looking at the reasons why people do and don’t vaccinate. He’s recently completed a pilot study looking at attachment parents in particular.
Jon Wardle: Vaccination rates are some of the highest in the world in Australia. There are pockets where they do fall below what we do need for [unclear] so the northern rivers, northern beaches. Eastern Sydney can be a bit problematic. But by and large the vaccination rates are pretty high. The problems that we have in Australia certainly aren’t the same level as we see in North America or France or some of the other countries.
Ellen Leabeater: You’ve recently undertaken an exploratory pilot study looking at why attachment parents in particular have debates as to whether to vaccinate or not the vaccinate. Why did you choose the attachment parenting style in particular?
Jon Wardle: Basically it was a convenient sample to actually use to explore this issue. Because we know that attachment parents do have a debate on vaccination, whether they should, whether they shouldn’t. They have variable views. Probably about half do. Probably about half don’t. Compared to the general population where you’ve got 95 per cent of people doing it and five per cent perhaps questioning it. It’s much easier to find an equal number of pro and anti-people in that attachment community.
Ellen Leabeater: Taking a step back, how did you define attachment parenting?
Jon Wardle: Well attachment parents are a self-identified group. They’re a pretty close knit community. There’s a lot of interaction via social media and physical presence too. So if you go to a place like the northern beaches there are usually weekend meet ups. This is a theory of parenting based largely on a book by Dr Sears. An American physician who advocated I guess a natural approach to parenting and co-sleeping, physical touch. The parent always being present around the children. A number of these other factors.
Ellen Leabeater: So you weren’t interested in whether the parents did or didn’t vaccinate. You were more focussed on what influenced them and who influenced them to make that decision. So what and who was influencing their decisions?
Jon Wardle: I think the key thing that we actually found out was that health practitioners play a very very small role in the decision that they make.
Ellen Leabeater: Like your GP?
Jon Wardle: So GPs were not involved at all in the discussion. If they were involved they were generally seen as not particularly helpful. We had a parent who is very very pro vaccination now who had been anti vaccination historically. She actually relayed that she thought that if she hadn’t spoken to a GP about vaccinations she would actually have been prof vaccination far quicker than she’d actually been.
So sometimes the approach to communication can actually tell people, can influence the way that people actually made the decisions. So not being able to have a conversation with a health care provider. So a lot of the parents relayed trying to raise a discussion with the health care provider and being shut off. So that forced them to find information elsewhere.
But ultimately this was something that the attachment parenting group by default I guess is a group that sort of comes about from people questioning conventional approaches to anything. When they make any decision around their child they don’t necessarily just go the conventional route. They might end up at the conventional route but they don’t choose it as their default. They do tend to research whatever they do. Self-study was probably the biggest factor.
Ellen Leabeater: What about these fence sitters who have information from both sides? What made them choose one side or the other?
Jon Wardle: Well this was something that was really interesting because it was really the way that the benefits of one side over the other were communicated. What we found were the anti-vaccination groups tended to emotionally connect a lot better with parents than the public health groups did.
So public health the messages on vaccination tend to focus more on facts. They tended to be very cautious about relaying any risks. There are risks to vaccination. They’re very very small when you look at the benefits but there are some risks. But the fact that these risks weren’t communicated and then the parents would find them, even in government material. You know the small risk of redness, you know those sorts of things, made them question what their doctors were saying.
Ellen Leabeater: Or weren’t saying.
Jon Wardle: Or weren’t saying. Just even the ability to have a conversation. So when they’d go to New South Wales Health or they’d go to their nurse or their doctor, the conversation would be shut down because the doctor was convinced that there was nothing to discuss about vaccination because the case was so clear cut. Whereas when they went to an anti-vaccination group it was more of a, yes we understand that your children are very important but you have concerns. These are understandable concerns.
That’s basically if you’re look at it from a marketing and advertising perspective, everything that marketers and advertisers tell companies to do the anti-vaccination groups were doing. And everything they’d tell companies not to do the public health groups were doing.
Ellen Leabeater: Just to quote you off air, you said parents don’t think in facts.
Jon Wardle: No. Parents don’t think in facts. When you have a child everything even small risks become blown up disproportionately because they’re your child and you don’t want to put them through any harm. If you look at some Julie Leask's work for example, the failure to even discuss the small in vaccination. There is a reason for that. A lot of people are concerned that if they relay risk that these risks will be blown up disproportionately.
What other work in Australia has actually shown is that not disclosing these risks can actually make parents even angrier once they find out about these risks. Even if they are the tiniest things like redness or irritability that can happen after. Temperatures that can happen after a child – but most of these things are resolved very very quickly. There’s a very very small chance that pretty significant damage can be done with vaccination but ultimately you choose one risk over the other and not giving them a vaccination puts them in a greater risk of much more dangerous events in the first place.
But it was the communication of how these things were put forward to parents that was a very very clear difference between groups and actually did influence decision making from one group over the other. Even little things. We tend to think of the anti-vaccination community as unscientific. One of the things that I thought was really interesting was the information that they were provided by these groups was referenced. They’d always reference correctly or sight it correctly as one thing but it looked like it was a real research document.
The stuff they were given by New South Wales Health or their general physician it’s either the small information sheet that comes in the vaccination packet that’s actually written by the drug company or it’s a pamphlet from New South Wales Health that just talks about benefits but doesn’t actually have a reference list down the bottom. These sorts of things come into place. We don’t tend to think as the anti-vaccination group as more scientific but it certainly looks more scientific to a parent that perhaps doesn’t know science as much as a scientist does.
Ellen Leabeater: The No Jab No Pay rules did come into effect on 1 January this year. From your research did any of the parents discuss whether this would be an incentive to get the vaccinations?
Jon Wardle: No. Not at all. These people aren’t making the decision financially. There was a lot of concern that they would have to try and find the money somehow. The reality is too, a lot of people that don’t vaccinate in Australia are wealthier than perhaps, particularly in the attachment parenting group than the average population so they can probably afford to pay those extra costs.
But there were also things that were brought up like informal day-care which actually turned out to be even cheaper than the No Jab No Pay subsidy. An unemployed mother agreeing to look after everyone else’s unvaccinated kids for $50 a day or something like that. So the solutions had already been found to these things so there was certainly no – people were upset and they were disappointed that this had been done but it certainly hadn’t waivered their decision in any way.
Ellen Leabeater: What do you think governments can do to encourage the anti-vacs to vaccinate. That very very small.
Jon Wardle: Yes. Well I think one thing we need to do is really have a look at the reality of the situation. Even with this anti-vaccination community in Australia, the vaccination rates are quite high. I do tend to think that we perhaps as the anti-vaccination group as being more significant that it perhaps is. What we found is that there were a lot of people that don’t vaccinate that don’t even like talking to the vaccination groups because they think of them as too crazy and too emotive. Even the people that weren’t vaccinating, the anti-vaccination groups weren’t always influential in their decision making either.
Ellen Leabeater: For another proportion of the group wasn’t access the main issue?
Jon Wardle: Access is a big issue. We found this – this actually came from our work with Medicare local, which is a different project. But some of the areas of lowest vaccination are areas where you’ve got high casualization of the workforce, high incidence of single parent families, low incidence of motor vehicle ownership, low socio-economic status.
In these groups the biggest issue isn’t so much the attitudes to vaccination, it’s actually getting the time to vaccinate children. So if you are a single mother, you work in a casual shift, you have an appointment with your doctor. You’ve probably got a bulk billing appointment which is hard to get and you have to do these weeks in advance. You’re given a choice – your boss rings you up and says I’ve got an extra shift for you, do you want to take it?
That’s really you’re ultimately going to be more important for putting food on your family’s table. These sorts of things can get overlooked and they often don’t get caught up. These access issues are probably more important than the anti-vaccination issues that we see.
Ellen Leabeater: What’s next for this research? It was just a pilot study. Is there plans to do any more research?
Jon Wardle: Yes. So because we focussed on decision making, ultimately what we want to do and our hypothesis was that public health was communicating poorly with people that were sitting on the fence. So not everyone was automatically anti-vaccination but they were making a decision. This side of the argument perhaps was more effective than the other.
What we are looking to do is expand this into bigger groups because attachment parents aren’t the only groups in Australia that have been linked with not vaccinating. There are groups that are using natural approaches to health care. Complementary medicine users. There’s a big thing about chiropractic recently. But we want to actually look at more representative populations to see what across the spectrum Australia actually informs decisions. Once we have this we want to try and work out what kind of arguments are more persuasive.
Ellen Leabeater: Jon Wardle from the UTS Faculty of Health speaking about alternative strategies to catch people who don’t vaccinate.
Don’t forget if you’d like to find out more about anything you heard today, you can visit us 2SER.com/thinkhealth. Please remember that you should not consider the contents of this show medical advice. If this show has made you ask questions, which is great, go and see your GP. This show is produced with the support of the University of Technology Sydney Faculty of Health. I’m Ellen Leabeater, this has been Think Health. See you next week for more in health research and news.
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