‘Extreme Morning Sickness Made Me Consider A Termination – So Why Is It Still So Misunderstood?’

At nine weeks pregnant, Rowan, an emergency service worker from Lancashire, collapsed and was unable to get back to her feet following two months of almost constant vomiting. ‘I was too weak to move – my husband had to hoist me up,’ she remembers. ‘That was the moment I became scared about what I was experiencing. Everyone kept telling me it was normal, that they’d had morning sickness too, but I knew I was starving myself and the baby we so desperately wanted.

‘The next morning my speech was slurred and I wasn’t making sense, but my GP dismissed my concerns. I hadn’t been able to eat, drink, sleep or function for weeks and my mum ended up taking me to hospital where I was eventually given a bed next to another lady with hyperemesis gravidarum (HG) who vomited and cried for 12 hours straight. Hearing her beg doctors for an abortion has stayed with me ever since.’

Tragically, Rowan’s experience isn’t uncommon. A recent survey conducted by Pregnancy Sickness Support – a UK-based charity dedicated to supporting women with hyperemesis gravidarum – reports 5% of women have terminated a wanted pregnancy due to the severity of their HG symptoms, while a quarter of all respondents have experienced suicidal ideation and 6.6% regularly contemplate taking their own life. But despite it being far from a new medical condition (in 1855, the writer Charlotte Brontë and her unborn child died from HG, while the Duchess of Cambridge suffered from it during all three of her pregnancies), the official cause is still unknown and a lack of research, education and funding continues to hamper meaningful progress.

‘Historically, HG has been dismissed as “women not coping with a bit of morning sickness” but it’s actually a life-threatening condition,’ explains Dr Caitlin Dean, a nurse specialist and chairperson for Pregnancy Sickness Support. ‘Prior to the invention of IV fluids and modern medications, it was the leading cause of death in early pregnancy.’

Indeed, while a plethora of anti-sickness medication can be prescribed to help manage symptoms – which can include severe and continuous nausea, headaches, excessive salivation, and a warped sense of smell – sufferers report they aren’t always effective or forthcoming, with many forced to fight for medical intervention.

‘People thought I was being weak or dramatic and I didn’t feel supported at work,’ says Jessica, a midwife from West Yorkshire. ‘I lost over a stone during my pregnancy – the nausea was constant and I vomited up to 40 times a day but, even as a midwife, I’d had no training in HG. The mental impact was the worst aspect: the utter relentlessness of it meant there was no escape. I wanted to rip my own throat out to stop the nausea and I scored very high for depression.

‘In hindsight, I would have been kinder to myself if I’d been officially diagnosed, but “pregnancy sickness” was written on my sick note, which made me feel weak and escalated my mental battle. Midwives are still telling women with hyperemesis gravidarum to add ginger to their diet, or that the symptoms will disappear by 16 weeks – and that's just not true. As a midwife, I know that HG is barely mentioned in universities and there’s no mandatory training. There needs to be a much stronger focus on care.’

It’s a view Dr Marlena Fejzo, a professor of obstetrics and gynaecology at University of Southern California, echoes. ‘I’ve been working in this field for 21 years now – ever since I lost a baby to HG in the second trimester – and the recent publications of terminations of wanted pregnancies, suicidal ideation and PTSD show that there is a clear deficit that needs to be filled urgently. This must start with proper education and training of new doctors.’

Dr Fejzo also holds the thalidomide scandal responsible for creating a fear of approving and taking medication during pregnancy. In the late 1950s, thalidomide was taken by pregnant women for morning sickness, despite not being tested on pregnant women. It led to miscarriages and more than 10,000 children being born with deformities and it was taken off the market in 1961.

Thankfully, recent breakthroughs in science have revealed that the gene GDF15 is strongly associated with HG, and while further funding is urgently needed to explore this link, many are hopeful it will lead to a change in the way HG is tested and treated.

Sadly, it’s all too little too late for Laura, an associate vaccinator from Aberdeen, who suffered with HG throughout four pregnancies, and was tragically forced to terminate her third son, who she named Jonah, at 17 weeks. ‘By this point my kidneys had started to shut down because of the lack of fluids and I had to terminate to save my life,’ she says. ‘Upon inspection of my placenta, it was found there would have been a risk of him not surviving past 20 weeks [because of malnutrition]. These are the real effects of HG. Jonah left a massive hole in my heart and I really struggled to cope with his loss. I felt like I’d failed him.’

Even when a woman has a healthy birth after HG, the scars can still run deep.

‘I remember a midwife asking me why I was crying [after I had given birth], as if all the trauma and pain just dissolves, as if nine months of HG wouldn’t affect me,’ recalls Kimber MacGibbon, a registered nurse, and executive director and co-founder of HER Foundation – a non-profit organisation she launched after experiencing HG. ‘My midwife told me I’d go home and everything would be OK. But I wasn’t OK. I didn't feel even reasonably well for another 18 months.’

It’s a story that’s been reflected back at her since HER Foundation launched 21 years ago, reaching more than two million people online and thousands more in one-to-one support sessions. But, like Dr Marlena Fejzo – who is also chair of the HER Foundation Research Committee – MacGibbon wants to see real progress. ‘If men had HG, there would be more funding,’ she says. ‘If we can educate a new generation of health professionals about the consequences of inadequately treated HG, we can greatly improve care. We need more data, women deserve more research.’

For Laura, compassion would also go a long way. ‘The issue with HG is that unless you’ve suffered from it, no one will ever be able to offer the level of support that we need. To some, we are just dramatic. To others, we have [psychological] issues. In reality we are scared, and we need understanding and validation that how we’re feeling isn’t just in our heads.’

For further advice, contact Pregnancy Sickness Support or HER Foundation****, both of which offer up-to-date information on HG, plus dedicated support.