Hyperemesis gravidarum: sufferers need support, compassion and better research

Hyperemesis gravidarum (HG) is a severe form of nausea and vomiting in pregnancy. It affects around 1% of pregnancies and is the most common reason for a woman to be hospitalized during pregnancy. Many more of us have heard of HG since Kate Middleton went through her two pregnancies suffering from it, but it wasn’t until I started reading more about it for this blog that I learned just how long-lasting this is for many women and its effects so severe that some women suffering from HG terminate their pregnancies.

HG: it’s not only nausea and vomiting

Caitlin Dean and her children

“HG takes over your every waking moment for nine long and extraordinarily lonely months” – Caitlin Dean

Caitlin Dean, survivor of three HG pregnancies and Chair of the UK charity supporting women with HG, Pregnancy Sickness Support (PSS), explains:

“Plenty of people can imagine that crippling nausea and near constant vomiting for anything more than two days is not nice, even if it “for a good reason”! But really the nausea and vomiting is only one aspect of a life changing, family limiting, sanity destroying condition which takes over your every waking moment for nine long and extraordinarily lonely months.

HG is not only nausea and vomiting. It is a sense of smell so powerful and warped that your loved ones can’t come near enough to comfort you without triggering retching. It is not being able to swallow your own saliva without puking it back up, so you just have to spit constantly into a towel or a cup. It is not just days lying still in a dark room but weeks and even months of it. It is not being able to eat or drink for days and being racked with guilt about the unknown harm you’re imagine your doing to your baby before it’s even formed. And then seeking help and being faced with more guilt about taking medication during pregnancy thanks to old stigmas and a lack of awareness. It’s having a life threatening condition which people tell you constantly to take ginger for!

The mental toll that all of the above takes is understandably profound. And yet, what I’ve described above is only a fraction of what HG is to the thousands of women who suffer it every year. There is also the financial toll on families, the damaged relationships, the long term complications and damage to your gastro-intestinal tract, the memories of smells that can trigger nausea and panic many years after. It becomes easy to see why Post Traumatic Stress Disorder is common after HG not just for women but their partners too.

“HG is not being able to swallow your own saliva without puking”

I couldn’t wait to have babies, I had always looked forward to pregnancy, sickness and all. So when my husband and I got the little blue line and a few days later I was sick for the first time we were delighted… Morning sickness… No problem. I’d take it like the tough mama I was gunna be. What’s a bit of sickness in the scheme of growing a new life after all? A few days later I hadn’t stopped throwing up and before even my first hospital admission I was fantasizing about miscarriage or terminating my precious baby. I’d imagined I’d be an all natural, organic eating, cotton wearing earth mother avoiding all medication, alcohol and hair dye… Until I was faced with a prescription for an antiemetic and my feelings of guilt exploded exponentially.

What I have come to realise is that I am a woman that experiences HG during pregnancy and therefore I can only maintain a pregnancy with medication. But it’s not just my own preconceptions that caused my feelings of guilt; it was the whole of society, lay people and medical professionals, immediate family and total strangers who questioned my “choice” to take mediation for a condition which, prior to IV therapy and antiemetics, was the leading cause of death in early pregnancy.”

What do we know about treatments for HG?

Pregnant woman by toilet feeling sick

The Cochrane review found little evidence to help women make choices about interventions for HG

So what help is there for women, like Caitlin, who suffer from HG? A range of different strategies are currently used to try to lessen the effects, including drugs, complementary therapies and dietary modifications. Is there good evidence to help people decide which of these they might try? That is what a team from the Cochrane Pregnancy and Childbirth Group set out to investigate in a new review, published this week, that brings together the best available evidence on treatments for HG. A previous review looked at less severe nausea and vomiting in pregnancy (you can read about that in this blog) and this one looked only at research on HG.

The reviewers were interested in randomized controlled trials on any intervention for HG and the impact on sickness (the number of episodes of sickness and whether they affected the severity of sickness, reduced or stopped it) and days in hospital. They also wanted to know about readmission to hospital and the need for extra anti-sickness drugs or feeding via a tube or drip; any ill effects on mothers or babies, and impact on quality of life, including a decision to terminate the pregnancy.

The review includes 25 studies with 2052 women. There were 18 different comparisons, with interventions including acupuncture/acupressure, intravenous fluids and various drug treatments, and only a small amount of data on each. There were no studies at all of dietary or other lifestyle interventions – how surprising!

The reviewers conclude:

“there is little high-quality and consistent evidence supporting any one intervention, which should be taken into account when making management decisions.”

Making research more useful

The Cochrane reviewers note shortcomings of the evidence that highlight the need for consistency in how HG is defined, for a core set of outcomes using validated measures, and for larger placebo-controlled trials. Caitlin Dean welcomes work that is under way to tackle the need for core outcomes and an agreed definition of HG, by the team which conducted a recent systematic review on corticosteroids for HG and, like the Cochrane reviewers, highlighted these issues as essential for making research useful.

Caitlin was disappointed by the lack of patient involvement in the Cochrane review and is very clear that HG research needs to involve women with experience of it, if is to be meaningful:

“None of the current measures capture what is important to women with HG”

“None of the current measures capture what is important to women suffering. So for example, a drug may not reduce the number of hospital days she has during a pregnancy but may have prevented her terminating a wanted baby. The commonly used PUQE score also doesn’t capture the benefits of drugs which take hours of nausea from “every waking moment” to say, 10 hours per day, which again can make the difference between continuing the pregnancy or not. The definition of HG is also problematic as admission to hospital is far from sufficient, as many women terminate (which is surely the worst fetal outcome) having been denied access to secondary care.”

Caitlin, along with the PSS trustees and volunteers, strongly disagrees with proposals to conduct placebo-controlled trials of antiemetics. “They’ve been around for years and they have been established as antiemetic drugs in placebo drug trials in other lower risk conditions, where the risk of terminating a wanted pregnancy doesn’t exist. We don’t need placebo trials to see if antiemetics are still antiemetics. For more on this see my most recent Spewing Mummy post on this topic in which I ask for women’s views on placebo trials in HG. It’s a unanimous no… It won’t work because women won’t be recruited to it and it’s unethical.

Stigma, isolation, lack of awareness…

“Nausea and vomiting and other physical symptoms are only half the battle”, Caitlin tells me, “the half which we don’t really have a cure for. But the other half of the battle… The guilt, the stigma, the isolation and financial burden, the lack of awareness and suggestions of ginger. They are things which we can choose to end for women here and now with support, compassion and knowledge.”

This is what Pregnancy Sickness Support aims to do. Tomorrow, ahead of  International HG Awareness Day on 15th May, they will be hosting their biennial volunteer conference in Bristol, following the opening of the Pregnancy Sickness Unit at St Michael’s Hospital, Bristol. The charity is continuing to campaign for more units like this one, and for better treatment and support for women with HG. You can follow the conference on Twitter @HGSupportUK #HGConf16, where you can also find Caitlin @SpewingMummy.

Let’s hope that future updates of the Cochrane review will be able to provide better evidence for women about available treatments, drawing on research that uses an agreed definition of HG and a core outcome set developed with women with experience of HG working alongside researchers. Meanwhile, the work of people like Caitlin and the PSS volunteers can do much to raise awareness and support women with this condition.

Creative Commons License
Hyperemesis gravidarum: sufferers need support, compassion and better research by Sarah Chapman is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License.
Based on a work at http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010607.pub2/abstract?systemMessage=Wiley+Online+Library+will+be+unavailable+on+Saturday+14th+May+11:00-14:00+BST+/+06:00-09:00+EDT+/+18:00-21:00+SGT+for+essential+maintenance.Apologies+for+the+inconvenience..
Permissions beyond the scope of this license may be available at http://www.cochrane.org/CD010607/PREG_interventions-hyperemesis-gravidarum. The photograph of Caitlin Dean and children is reproduced here with Caitlin’s permission. Other images were purchased for Evidently Cochrane from istock.com and may not be reproduced.

Links:

Boelig RCBarton SJSaccone GKelly AJEdwards SJBerghella VInterventions for treating hyperemesis gravidarumCochrane Database of Systematic Reviews 2016, Issue 5. Art. No.: CD010607. DOI: 10.1002/14651858.CD010607.pub2.

Plain language summary of this review http://www.cochrane.org/CD010607/PREG_interventions-hyperemesis-gravidarum

Grooten IJ, Vinke ME, Roseboom TJ, Painter RC. A systematic review and meta-analysis of the utility of corticosteroids in the treatment of hyperemesis gravidarum. Nutrition and Metabolic Insights 2016; 8 (Suppl 1): 23-32. DOI: 10.4137/NMI.S29532.

 

Related Post


Sarah Chapman

About Sarah Chapman

view all posts

Sarah's work as a Knowledge Broker at Cochrane UK focuses on disseminating Cochrane evidence through social media, including Evidently Cochrane blogs, blogshots and the ‘Evidence for Everyday’ series for nurses, midwives, allied health professionals and patients. A former registered general nurse, Sarah has a particular interest making evidence accessible and useful to practitioners and to others making decisions about health. Before joining Cochrane, Sarah also worked on systematic reviews for the University of Oxford and the Royal College of Nursing Institute, and obtained degrees in History from the University of Oxford and in the history of women’s health and illness in early modern England (MPhil., University of Reading).

Leave a Reply

Your email address will not be published. Required fields are marked *

*

UA-49496932-1