The uncomfortable truth about Hyperemesis Gravidarum

“This is the sound of my pregnancy.” There were a few slightly uneasy chuckles around the room as Katrine Moholt, Norwegian actress, fumbled around a few seconds before she played an audio file. Everyone knew what they were about to hear. Then, it came out: Gurgling. Moaning. Retching. Of course, most of us laughed – that was the expected reaction - but we also all knew that these sounds were synonymous with the incredible physical and emotional suffering thousands of women have gone through when dealing with extreme nausea and vomiting in pregnancy – also known as “Hyperemesis Gravidarum” (HG).

hyperemesis-gravidarumThis is how Moholt opened what proved to be two days of inspiring, informative, and potentially impactful presentations and discussions on the topic of HG. The first world colloquium on Hyperemesis Gravidarum, which was hosted by the Norwegian Hyperemesis Initiative (NoHype), brought together physicians, nurses, researchers, patient groups and other stakeholders from Norway, Germany, Sweden, UK, Belgium, the Netherlands, US, Canada and Israel for the first time. Moholt’s humorous but touching story told of two first pregnancies riddled by sickness and then a third one, much later, in which she took control of the condition with the support of her family so it wouldn’t control her. This was a humbling reminder that what these women face is probably one of the most difficult times of their lives, when everyone tells them it should be the happiest.

It’s estimated that severe nausea and vomiting or HG marks approximately 1 to 3% of pregnancies, but as participants learned in the conference, these numbers are likely far from accurate. There is no clear definition of HG, nor is it always fully recognized as a medical condition in its own right by the medical profession. In fact, until recently – and even today, still - many countries treated HG as a “hysterical” condition in the pregnant woman, and addressed it by subjecting her to complete isolation and often associating her physical sickness with an unadmitted desire to rid herself of her unborn baby.

But the multiple studies presented over the course of the symposium told a different story. While much work still needs to be done, there are now many indications that genetic and hormonal factors are linked to HG. In addition, evidence of short and potential long-term health effects on both mother and offspring were brought to light, comparing the effects of HG to those observed on pregnancy outcomes during the Dutch famine of 1944. The obvious psychological impact of the condition should also not be overlooked, a major outcome of which is the significant number of (reported) terminations of wanted pregnancies.

Of the many challenges evoked by presenters and attendees with relation to the condition, one of the most striking was the fact that HG sufferers face a tremendous lack of medical care. While a number of anti-emetics are proven to provide effective relief to HG sufferers, with no evidence of harm to the fetus, few doctors will prescribe them because they are concerned about the liability of off-label prescription.

“The clinical pharmacology of pregnancy is a very neglected field,” stated Dr Gideon Koren, Professor at the University of Toronto and founder of the Motherisk program. He feels more should be done to provide effective treatment early in pregnancy, which could help prevent escalation to full-blown hyperemesis.

“The clinical pharmacology of pregnancy
is a very neglected field.”
Dr Gideon Koren, University of Toronto and Motherisk.

To which many participants added: Shouldn’t the potential fetal risk of an effective treatment be measured against the potential risk of not treating the condition? “One of the major challenges ahead is getting acceptance from healthcare providers that safe effective treatment of HG is possible and necessary,” said Dr Roger Gadsby, of Warwick Medical School and founder of the Pregnancy Sickness Support charity in the UK. Not stated was another factor: women’s reluctance to take medication while pregnant for fear of harming the baby.

But as Ragnhild Sageng, of HG Norge - herself a sufferer- implored in her own testimonial: “Just deal with it” should not be what a hyperemesis sufferer hears when seeking medical help.

There is a long road ahead in establishing diagnosis and treatment guidelines for HG, as well as fully understanding the causes and impact of the condition. Other aspects, which were not discussed here but should not be overlooked, are the impact on the pregnant woman’s family and partner. But one thing is for sure – the meeting was a significant milestone in the right direction, and all participants were keen to continue to contribute to advancing the science and care of HG.

Leave a comment