A survey of more than 5000 women with hyperemesis gravidarum (HG), published today in Obstetric Medicine, details the harrowing illness. The survey found 4.9% of women terminated a wanted pregnancy because of suffering from HG, while 52.1% of women had considered termination. 25.5% women surveyed occasionally thought about suicide, while 6.6% of women regularly considered it. One woman described how she became ‘so ill that I considered termination, when I couldn’t bring myself to do that, I contemplated taking my own life’.
The survey, which is the largest study into the condition, was developed as a collaboration between the BBC and the Pregnancy Sickness Support charity, who sent it to their members. The results were analysed by researchers from King’s and Guy’s and St Thomas’ NHS Foundation Trust. The authors analysed 5500 free text comments and also showed an association between the level of care patients perceive they have received from healthcare professions and outcomes such as poor mental health and termination of pregnancy.
HG is defined as persistent and excessive nausea and vomiting that affects 0.3-3.6% of pregnancies. Of the women surveyed, 67.8% were bedridden throughout their pregnancy and needed daily support. This impacted on their ability to go to work and caring responsibilities. One woman described making the decision to terminate ‘to avoid losing my new job and home for my first child, which I had rented after 6-months of homelessness’.
Women also described difficulty in accessing medications: 85.7% of participants took prescribed medication, however 41.2% of these women had to actively request these. 15.3% and 24.1% of women described their primary care experience to be ‘extremely poor’ or ‘poor’ respectively, while 9.9% and 20.1 described their secondary care experience to be ‘extremely poor’ or ‘poor’ respectively. One woman described being ‘made to feel stupid when I reported the extent of my sickness and told that I should really have been able to cope’.
Lack of support from family members was also a common theme demonstrating the importance of improving awareness of the condition to members of the public.
Women described how death felt preferable to constant nausea and vomiting, with 19 women stating that they ‘hoped to not wake up each morning’. There were 74 individual comments relating to anxiety regarding future pregnancy, including women describing being ‘fearful’, ‘petrified’ and ‘terrified’. In 184 women their experience resulted in them making the decision not to have another baby in the future.
This study describes the lived experience of many women across the UK who have suffered with hyperemesis gravidarum and reflects our clinical experience of looking after such patients. It highlights the importance of ensuring women can easily access anti-sickness medication in a timely fashion, the need to provide good guidance for the healthcare professionals looking after them and the great value of mental health support in women who need it.– Dr Melanie Nana, from the School of Life Course Sciences
Senior author, Professor Catherine Williamson from King’s College London, said: “This study has confirmed the urgent need for further research into this devastating condition. We hope that the work we are currently carrying out at King’s College London will allow us to find out more about the effects that hyperemesis gravidarum has on both the mother and developing child and also about what causes this illness. By answering these questions, we will be able to develop more effective treatments, improving the care of these women.”
Dr Caitlin Dean, Chairperson for Pregnancy Sickness Support which runs a helpline for the condition, said: "Sadly, while there are pockets of excellent care for hyperemesis gravidarum and individual staff who treat the condition well, this is still not the norm and the experiences of these women are very much representative of the many calls we receive daily to our charity. There remains to this day a persistent stigma around pregnancy sickness which hampers access to treatment and results in women losing their desperately wanted babies."
If you have been, or are currently, affected by hyperemesis gravidarum you can get in touch with Pregnancy Sickness Support via their website or helpline: www.pregnancysicknesssupport.org.uk / 024 7638 2020 (mon-fri 9am-5pm)