When Vicky was pregnant last year, a midwife offered her a vaccination to protect her unborn baby from whooping cough.
Vicky felt conflicted. “My head was telling me yes, do it, because of my research and because I’m not particularly anti-vaccine. But there was something about being pregnant and having this precious child inside me that I was fully responsible for. Anything that I ate or did was going to have an impact on him.”
Whooping cough, also known as pertussis, is highly contagious and can be fatal in young babies. The vaccination for the mother protects them in their first two months – before they are old enough to have their own booster vaccine – has been offered to all pregnant women in the UK since 2012, when 14 newborns died in an outbreak that was the biggest for two decades.
There’s no evidence the vaccine can harm babies or mothers – studies including a paper looking at 20,000 UK women have found no ill effects.
But Vicky, who is now 23, while her baby is nine months old, said no to having it, making her one of around a quarter of pregnant women in the UK who turn down the offer down.
Vicky says she was concerned that vaccination seemed to contradict the general advice that tells pregnant women to avoid medication and be cautious about what they put into their bodies.
“I felt that seeing as we are forbidden so many things – cheeses, fish etc – I wasn't comfortable giving him a vaccine at such a vulnerable time,” she says. “When you’re told that you can’t have Brie, for example, and then they tell you, ‘OK, have a bit of this illness put into you,’ it makes you question things.”
Pregnancy is a nerve-racking experience and women are bombarded with health information, some of it true, some unsubstantiated and some dangerous rubbish.
Aside from proven dangers like smoking, drinking heavily, using some medicines like ibuprofen and eating foods like pâté or blue cheese, a lot of other advice follows a “better safe than sorry” approach because it’s too risky for scientists to carry out research on pregnant women to conclusively prove whether something is harmful.
As a result, the media often shares frightening warnings backed by minimal evidence. A 2013 story in the Daily Mail claimed pregnant women should avoid chemicals in cosmetics like moisturisers and shower gels and minimise buying items like non-stick frying pans and cars due to the chemicals they are coated in.
The NHS called this “needlessly alarmist without providing any credible evidence of a threat”. Yet, in a move that sums up the confusing health messages for pregnant women, it still suggested “nervous mothers-to-be” may want to take the recommendations on board anyway.
Helen Campbell, a senior clinical scientist at Public Health England, says 72% of pregnant women offered the vaccine between January and March 2018 in England took up the offer. It’s one of the highest rates in the world and no UK babies died from whooping cough in 2017 for the first time in years. “But of course we would always like as many babies as possible to be protected,” she adds.
Vicky now regrets not having the vaccine. She went on to give her baby all the vaccinations offered after he was born.
“I felt really sort of selfish that maybe this living form that I’d created could become ill directly from a decision I’ve made,” she explains. “I suffered from quite bad postpartum anxiety. I’d be looking at him and every time he coughed I’d think, ‘Oh, my goodness, is that the cough?’
“I wish that I hadn’t been so worried about [the vaccine during pregnancy]. Maybe if I had had it I wouldn’t have gone through all those negative things [after the birth].”
Campbell says the introduction of the vaccine in 2012 marks “a new era in a sense that midwives had always been encouraged to advise pregnant women not to have any intervention in pregnancy. I think that it is a difficult choice for some women because of those fears, and it’s understandable.”
There was something about being pregnant and having this precious child inside me that I was fully responsible for. Anything that I ate or did was going to have an impact on him
It’s no surprise that many women turn to the internet to try to address worries over the vaccine.
Type “whooping cough vaccine” into Google and you’ll get dropdown suggestions in the search bar like “pros and cons”, “risky”, “safety”, “autism” and “stillbirth”. It’s easy to find discredited pseudoscience and fake-news websites making inaccurate claims that it can cause disabilities, birth defects and “spread disease”.
The internet is also a home for fears over vaccines that have long since been debunked.
Karen, who didn’t want The Pool to use her real name, is 38 and lives in Sussex. When she was pregnant with her third child four years ago, she decided not to have the whooping-cough vaccine as part of an effort to minimise her exposure to any chemicals: “I even went as far as stopping using shampoo on my hair and bleach in the house, just in case.”
At the time, her oldest child had an autism diagnosis, while her second was showing possible signs of being autistic, and she felt reducing her exposure to chemicals could prevent her third from also showing signs.
Fears around vaccines and autism are still fuelled by the 1998 research of British scientist Andrew Wakefield, who incorrectly claimed that the childhood MMR vaccine was linked to autism. He was struck off the medical register, but the damage remains. Karen admits that she was “subconsciously swayed” by Wakefield’s ideas, despite knowing they have been discredited.
She researched the vaccine online, looking at NHS information, as well as rates of infection locally, and spoke to friends who were mums. But as the vaccine had only been offered for two years, she didn’t find enough research to reassure her. “I wasn’t convinced that there being ‘no evidence... vaccine is unsafe’ necessarily amounted to the same thing as ‘there will be no adverse effect’. I failed to track down how much research had been done to back this claim.”
She didn’t discuss her decision with a midwife, reflecting a 2016 Australian study that found that most pregnant women do not raise information they find online with medical professionals, meaning “health providers may not be aware of potentially inaccurate information or mistaken beliefs about pregnancy, reported on the internet”.
“I didn't feel it would've been a very open discussion,” Karen says. “I knew what the official stance was and believed that that was the only agenda they would be interested in – I'd just be opening myself up to being pushed into doing something I felt uncomfortable with.”
Carol Povey, director of the National Autistic Society’s Centre for Autism, told The Pool there is no link between autism and vaccines: “Despite research proving this comprehensively, damaging myths about autism persist in some circles – and must be challenged.
"We would recommend that anyone who wants to know the truth about vaccines and autism looks for reliable up-to-date sources of information before making any decisions, such as our website, autism.org.uk, or NHS Choices.”
Four years on, Karen’s third child is now being assessed, as he also shows signs of autism. This means she feels she’d have “less reason” to turn the vaccine down if she was pregnant again, but she would still feel “incredibly nervous about using non-essential drugs”.
“I also now know more about where to look for medical studies, and who to ask for help, so I might have a more fruitful search for evidence,” she added.
Despite research proving this comprehensively, damaging myths about autism persist in some circles – and must be challenged
In theory, doctors and midwives should be able to help women establish the information to make a decision. But sometimes even health professionals are sources of misinformation.
Gabriella Jozwiak, 35, lives in north London. When she was pregnant in 2015, a midwife told her that she had concerns over the whooping-cough vaccine: “She said that the NHS had recently purchased a new vaccine from a new supplier, so she said I should think about it because it was a new brand.”
Jozwiak looked on the NHS website and confirmed through her father and his wife – who are both biochemists – that the ingredients in the new brand were exactly the same as before.
“I’ve subsequently had interactions with her and I know that she is a good midwife, but I did feel that it was unnecessary to worry an anxious new mum,” Jozwiak says. “She represents the NHS and it’s confusing if someone who represents the NHS is telling you not to go with its advice.”
Campbell from Public Health England says it has worked extensively to inform midwives about the whooping-cough vaccine. “I’d hope you’d be very unlikely to come across a midwife with that view now,” she says.
It’s a bit frustrating sometimes, if something is the right thing to do, but I think personal choice is both a burden and something that sets you free
Misinformation and confusion around vaccines has serious consequences. The World Health Organization says low MMR vaccine uptake is to blame for a huge surge in measles across Europe, killing at least 37 people this year.
But it’s too simplistic to solely blame the internet, superstitions or ignorance for women’s decisions. Social media was recently blamed for making women “terrified” of having a baby, because stories about difficult births are shared on forums like Mumsnet.
In defence of this, Mumsnet CEO Justine Roberts told Metro that sharing experiences can be both reassuring and part of recovery: “We need to talk about childbirth – the good and the bad – more, not less.”
The same idea can apply to health decisions in pregnancy: more conversation and clarity is needed because such choices are made in a context of suffocating social expectations on mothers and mothers-to-be, who are judged based on their child’s wellbeing, yet also told to “follow their instincts”, and pressures on the NHS (there is a shortage of midwives and many women turn to online forums because of a lack of support for conditions like postnatal depression.)
All the people I spoke to for this piece agreed that what a pregnant woman does should be her choice.
“I believe every individual has a right to make a decision about such things themselves and shouldn't feel pressured into any path, so long as they have sound reasoning behind their decision,” says Karen. “But she also has a responsibility to base that choice on quality evidence-based information where it is available.
Jozwiak agrees that “within the NHS everything is personal choice”:
“No doctors can hold you to do anything – in my second pregnancy, I was advised to have a Caesarean and I didn’t want to, so I didn’t.
“We’re lucky. It’s a bit frustrating sometimes, if something is the right thing to do, but I think personal choice is both a burden and something that sets you free.”