The WRISK project regularly asks contributors to share their perspectives on a range of issues related to risk communication in pregnancy to further understanding of the challenges faced by scientists, clinicians, policy makers, and of course women themselves when trying to navigate risk messaging. These represent individual and personal viewpoints, and are aimed at encouraging reflection and discussion, rather than reaching conclusions.

Hyperemesis Gravidarum (HG) is a serious condition that occurs during pregnancy, having a toll on a woman’s physical and mental health. The WRISK project aims to draw attention to women’s experiences during pregnancy, including their experiences of conditions such as HG, and the risk communication they receive. We want to re-align messages about ‘risk’ relating pregnancy with women’s needs and lived experiences.

In this blog, Georgie Bevan shares her research on the impact Hyperemesis Gravidarum has on women’s lives and the care they received. Working with Pregnancy Sickness Support she collected the testimonies of more than 5,000 women, all sharing their HG story. Georgie is a journalist at the BBC.

 

 

 

I was making a cup of tea and listening to the radio when something stopped me in my tracks.   It was an interview with a woman who had gone through not one, but two terminations because she had been so desperately sick in those early stages of pregnancy.  She had vomited pretty much non-stop for weeks, becoming dangerously dehydrated and hospitalised.   The medical treatment she’d received hadn’t worked and what help she managed to get from doctors, she’d had to fight for.  Both pregnancies were wanted, but she was so ill, she felt forced to terminate.  This was the heart-breaking reality of Hyperemesis Gravidarum (HG) – an extreme form of pregnancy sickness.

 

Building impact

The interview ended, but the story stayed with me.  It’s estimated 1 in 100 pregnant women suffer from HG every year but few know what it really means – I certainly didn’t.   And it made me think.  If this was one woman’s experience, what if we gathered the testimony of hundreds, maybe thousands of women from across the UK, who’d lived through this dreadful condition?   What would their collective voices tell us and could it be used to bring HG out of the shadows?

I met up with Caitlin Dean from the charity Pregnancy Sickness Support (PSS) and over another cup of tea, pitched my plan.   Using techniques I’d developed on previous BBC survey projects, I put together an online research form with Caitlin’s input.   The questions focused on the impact HG had on women’s lives, in particular their mental and physical health in both the short and long term.   We also asked women to rate the care they’d received from their GP surgery and hospital.   The research form was designed to be anonymous and was circulated to PSS members and HG support groups with the tagline ‘Tell us your HG story’.   In less than an hour, we’d had more than 1,000 women responding.   In a few weeks we’d reached more than 5,000.

At the same time, Caitlin put me in touch with Prof Catherine Williamson and Peter Dixon from Kings College London.  They were months away from launching the largest European study of women with HG, here in the UK – a study which is funded by the National Institute of Health Research (NIHR) BioResource Rare Diseases collaboration and now underway.   It means, for the first time, scientists are gathering blood samples from more than a thousand women with severe HG and looking for genetic links and hormonal changes.  It’s hoped this could lead to a better understanding of the condition and one day, a cure.    With the new study launching and the BBC’s own online research, we now had a story with a fresh, editorial edge and large scale, original testimony.

 

Key findings

By gathering the testimony of more than 5,000 women, we’d actually ended up with the largest collection of HG case studies in the UK.  Following BBC editorial guidelines we reported the results in broad terms (as the sample was not representative).

  • Most of the women who took part said they’d considered terminating their pregnancy because they were so ill
  • One in three said they’d thought about killing themselves
  • Almost all said they now had long term physical and mental health problems  – including post-traumatic stress disorder and depression
  • More than one in three said their experience with their GP had been ‘poor’

For anyone who’s experienced the condition or treats it, the findings were no surprise.  For everyone else, they were a revelation.

 

Speaking out

Having generated our own BBC research, the next step was telling these HG stories on TV, radio and online, and reaching as many mainstream audiences as possible.    Thanks to Pregnancy Sickness Support and its network of HG women, we were inundated with women wanting to speak out and share their experiences – in fact in all my years working as a journalist I have never had so many excellent case studies to work with.   Soon dozens of women were lined up for interview on their local BBC radio station and regional TV as well as taking part in national coverage in Scotland and Wales and across the UK.

One of these women was Hannah Dalton, from Essex.  Pregnancy for her meant not being able to drink fluids for eight months without throwing up, going into hospital 27 times for intravenous drips and living off ice lollies and anti-sickness medication.  After being bedridden for six months, she also needed a wheelchair to get around.  Hannah told me ‘”We wanted a bigger family but there was a chance that they would lose me. I thought I was dying.”   She took part in filming just weeks before giving birth to her baby girl and then again, the day after she was born.

For termination case studies, we had a duty of care to protect the identity of all the women who spoke out.  These are the words of one woman who terminated three pregnancies because of HG.  She told the BBC “It’s your own personal hell that you can’t escape from. It’s devastating. It completely takes over your life, your family’s life, so it would be easier either to just miscarry or die.   I couldn’t take a breath while I was retching, so I passed out and woke up on the bathroom floor and I thought, ‘Oh my God, I can’t do this.’

On Wed 15th May 2019, on International HG Awareness Day, the BBC launched its coverage.  Alongside 5 Live, local radio and regional TV, the BBC’s flagship programmes, the Six and Ten o’clock News, both featured a film I’d made with Daniela Relph, a BBC correspondent and herself an HG survivor.  On Facebook, the story of Laura Anderson had an astonishing impact, reaching 1.4million hits.    Laura was about 14 weeks into her HG pregnancy when she agreed to film herself for the BBC.  Over the following months she recorded her journey with a powerful mix of emotion and hard hitting honesty.  You can watch both Hannah and Laura’s stories in the BBC’s online article here:  https://www.bbc.com/news/health-48228937

 

What next?

It’ll be several years before we know the results of the NIHR HG study but in collaboration with Pregnancy Sickness Support, the BBC’s HG findings are now being written up as part of an academic paper, which will hopefully be published in the coming months.     Following on from the success of this project, I am now working on a similar approach to Endometriosis, working closely with Endometriosis UK.    In October, I’ll be joining Caitlin Dean and Prof Catherine Williamson at the International HG conference in Amsterdam.

As for Laura Anderson, she’s just weeks away now from giving birth and filming the final part of her video diary.

She says “When this baby girl is born and the HG has gone, I will spend the rest of my life trying to raise awareness about this awful illness.    I’m doing it for my daughter, in case she gets it, and God forbid that she does.”

She, along with Hannah and many thousands of others are part of an extraordinary community which has been taken to the brink of endurance.    These women have not only survived HG, they offer invaluable support for others going through it.   Their bravery, kindness and determination are inspirational.  It’s been a privilege working with them and bringing their stories to a wider audience.   Thank you, you are all Wonderwomen!

 

If you are suffering from hyperemesis gravidarum and are looking for support please contact Pregnancy Sickness Support on twitter @HGSupportUK or check their website for more information https://www.pregnancysicknesssupport.org.uk/