Hyperemesis Gravidarum - The Definitive Guide

By Caitlin Dean and Amanda Shortman

Hyperemesis Gravidarum - The Definitive Guide is the complete handbook for women suffering this severe complication of pregnancy, their families and their healthcare providers. Covering everything from treatment options to coping strategies, the emotional impact to planning another baby, this book will be filled to the brim with information based o

• Language: English
• Publisher: Spewing Mummy
• Release date: Nov 26, 2014
• ISBN: 9780993062315

Book preview

Contents

Front Cover

Preface and Cheat Sheet

Part I – About Hyperemesis Gravidarum (Especially for Healthcare Professionals)

Chapter 1: What Is Hyperemesis Gravidarum

Chapter 2: Proposed Theories and Research into Hyperemesis Gravidarum

Chapter3: For Healthcare Professionals

Chapter 4: Management, Treatments, and Medications

Part II – The Hyperemesis Journey

Chapter 5: Getting Help: Signs to Watch for and Approaching Your GP

Chapter 6: Coping Strategies

Chapter 7: The Partner’s Experience

Chapter 8: Tips for Family and Friends

Chapter 9: Ending the Hyperemesis Pregnancy – Termination

Part III – Life After Hyperemesis

Chapter 10: Getting Back to ‘Normal’

Chapter 11: The Mental Health Legacy of Hyperemesis Gravidarum

Chapter 12: Trying again – Preparing for an HG Pregnancy

Chapter 13: Your Family, the Only Child and Adoption

Chapter 14: Your Family, the Only Child and Adoption

Part IV – Resources and Appendix

Appendix 1: Resources, Websites and Where to Get Help

Appendix 2: Useful Charts and Tables

Glossary

Supporting materials and all charts are available at spewingmummy.co.uk

Preface

What Is Hyperemesis Gravidarum, and Why Write a Book About It?

Hyperemesis gravidarum is, on the most basic level, an extreme form of nausea and vomiting in pregnancy (NVP). It is much rarer than the more typical symptoms of nausea and vomiting that many women experience during their first trimester, and very often it is totally omitted from pregnancy-related literature. So you can be forgiven if the term hyperemesis gravidarum (or HG as it is often called by its sufferers) is one you have never heard before.

And yet, though a much smaller proportion of pregnant women suffer from HG, there is a real need for awareness of and support for those suffering from the condition. HG can and usually does turn what many women regard as a fulfilling and joyful time of their lives into the worst nightmare imaginable for its sufferers. The physical symptoms alone are traumatic enough, but the mental and emotional responses to it can be just as devastating.

Amanda’s story:

I suffered from severe NVP during my first, and only, pregnancy. I believe I suffered from undiagnosed HG as I lost over 10% of my pre-pregnancy weight, survived on less than 500 ml of liquid a day for several weeks and spent months house-bound (sometimes completely bed-bound) by my symptoms. My care was pretty appalling and completely inconsistent. At 5 weeks, a GP told me he thought it was all in my head but prescribed an anti-emetic (which didn’t help), and then a couple of weeks later, a nurse practitioner told me she could see I was clearly dehydrated and instructed me to double the dose of the anti-emetic, only to tell me the following day that because there were no ketones present in my urine, I could not be admitted to hospital for fluids, I shouldn’t be taking any medication, and I just had to ‘put up and shut up’. From that point onwards, I fought a battle I had little strength for, and it took me until my fifth month to finally be prescribed another anti-emetic, which thankfully helped control my symptoms. I saw almost every GP in my surgery and was told all manner of things, but never given any clear information about what was happening to me. I was told there was nothing I could take to help with my symptoms, and my worry over things like my continued weight loss was dismissed without any attempt to alleviate my concerns. Thankfully, I was lucky enough to come across a US blogger who was also suffering and who empowered me to seek the help I needed and deserved. My sickness continued to the end of the pregnancy but at a much more manageable level once I finally received treatment that worked – I even had a blissful eight weeks during the latter part of my second trimester when if I ate regularly and rested enough, I felt pretty normal. I’ll never forget how incredible that felt! I just wish all women were given the information and support they needed right away, without having to fight so hard just to be heard. That’s why I started the book. It’s why I got involved with the charity Pregnancy Sickness Support, and it’s why I continue to fight for change.

Caitlin’s story:

I suffered from HG during my three pregnancies. In my first two, the care I received from my doctors was terrible and disjointed. I was brushed off and made to feel silly, selfish, and pathetic. But that was nothing compared to the isolation I experienced. Despite unfaltering support from my husband, no one else understood what I was going through, and I was utterly alone in my suffering. House-bound, in the days before Facebook on smart phones, I was going stir-crazy. Attempts to ‘help myself’ and get out of the house resulted in violent emetic episodes and days of deterioration. I went through it again with knowledge of medication and hope that support would be better but found that the treatments are no cure and the isolation was even more profound. By my third pregnancy, I had found a better doctor. Early and pro-active treatment kept symptoms under control for the most part, although it was still a challenge to get through every day. The biggest help though was the support I received from fellow sufferers whom I had met online, yet some of my closest friends now. The support network was born via my involvement in Pregnancy Sickness Support, and it has grown from there. My Spewing Mummy Blog has reached out to sufferers to provide a different sort of support – proactive and humorous I hope to inspire people to change the public attitude to hyperemesis, crush the myths that make our suffering worse, and improve care and treatment for sufferers around the world.

And so the reason for this book is twofold: to create an easily accessible source of information on the latest research into HG thereby helping to raise awareness of the condition, and to provide support to those suffering (or recovering) from hyperemesis and their families. The factual information printed in this book is balanced out by personal experiences of those who have faced severe NVP and HG before, in the hope that this will produce a book that helps as many women as possible to get through their pregnancies with the resources they need to make an informed choice about the management of their symptoms.

We’ll be covering the topic of HG and severe NVP in much more detail throughout the numerous chapters, providing references to medical research which you can use to help gain the recognition and support you need from your doctor, midwife, or consultant. However, it is not a text book, and so to keep it accessible to the women suffering in a number of areas, we refer to ‘studies’ collectively, which healthcare professionals (HCPs) may wish to access for themselves to gain a greater understanding. Rather than bombard women with references we have made the assumption throughout the book that healthcare professionals are capable of investigating studies further through their own online library memberships.

We know that one of the most difficult aspects of dealing with such severe pregnancy sickness comes from trying to explain in any kind of adequate detail just what this really means to those you see every day. Whether it’s unsympathetic family members, friends who just cannot understand why you have no time for them anymore, or work colleagues and management who put pressure on you to return to work before you’re ready. Most women with severe pregnancy sickness complain of someone who seems to have no understanding of what it means to be that ill.

And so, for that reason, we have produced a ‘cheat sheet’ of the most common and important points about pregnancy sickness that you can tear out and produce as ‘evidence’ to anyone who questions you or refuses to listen to what you’re saying. You can find this at the end of this preface. If you do not wish to tear the page out of the book, you can also download a printable copy from the Spewing Mummy website. We do hope it will help.

Finally, we want to point you to the organisations providing support, particularly the UK-based charity Pregnancy Sickness Support whose details are listed below and in the resource list at the end of the book. The charity is working hard to raise awareness of severe NVP and HG and build up a support network of volunteers around the country. Their aim is to inform rather than advise. They also put an emphasis on the fact that NVP is on a spectrum rather than having very clear and distinct stages and that any woman suffering from NVP that negatively affects her life in any way should be given support. Both of the authors work closely with the charity, and so we hope that we can follow the charity’s lead in this book by providing accurate information that benefits not only those with the more extreme form of HG but also those who are suffering from moderate to severe NVP.

Pregnancy Sickness Support (PSS)

Registered Charity No. 1094788

Information Line: 020 7638 2020

www.pregnancysicknesssupport.org.uk

For those outside the United Kingdom, there is information in the appendix about the Hyperemesis Education and Research (HER) Foundation in America and other organisations around the world who can help you. The information in this book is aimed at a UK audience in terms of medication names and the healthcare system structure of the United Kingdom. Much of it will be relevant to other countries too but not all, so it is best to contact the HER Foundation for treatment information specific to your location.

Beyond Morning Sickness is a book written by HG veteran Ashli Foshee McCall as a comprehensive guide to hyperemesis and its treatments. Based in America, the treatments and healthcare system is very different to the United Kingdom, so where this book is relevant to a UK audience Beyond Morning Sickness picks up the pieces for American readers. Caitlin would not have gone through hyperemesis again were it not for Ashli’s book, and it was very much the inspiration for this book. We hope this definitive guide for the UK will compliment the books already on the market and we highly recommend Beyond Morning Sickness.

You’ll also find a number of supporting materials on the Spewing Mummy website which accompanies this book. From survival calendars to download to blog posts about specific symptoms, there are lots of resources on there to help you get through the nightmare of HG. The cheat sheet below is available there along with all the other charts, care plans, and checklists from the book.

www.spewingmummy.co.uk

A note on our desicion to publish independently

Despite discussions with agents and publishers both in the UK and in America we decided to go down the independent route for two main reasons. Firstly and most importantly was control over content. We both felt that unless the editor happened to have been a sufferer themselves they were highly unlikely to understand the importance of much of the book’s content, particularly the emotional aspects of hyperemesis support and care. We didn’t want what we consider to be the most important aspects of the book to be stripped out or toned down by an editor who has never suffered. Secondly, there is a pretty niche market for hyperemesis gravidarum literature as it’s not a hugely common condition so, quite frankly, we’ll make more money, much of which will be ploughed back into the HG charities, by self publishing!

Hyperemesis gravidarum is not a popular condition to donate money to and the two main international charities, Pregnancy Sickness Support and The HER Foundation both struggle to get the funds to continue their crucial work. Both the authors currently provide significant financial and practical support not just to the UK charity but also to the Hyperemesis Improvement Movement happening all around the world–We need to make that more sustainable. If we published through a traditional publishing house it would be years before we saw a penny for our work. This way we can guarantee that a significant proportion of every book sale will come straight back to the authors and therefore further the work of the International Hyperemesis Improvement Movement by funding their work. Not only will a minimum of 10% of the profit from the book go direct to hyperemesis charities but the remainder will allow the authors to continue dedicating so much time and energy to raising awareness and supporting women.

Finally, by publishing independently the authors retain control over the promotion of the book. Instead of working with a PR team who do not necessarily know the HG Community, the authors are able to work with people dedicated to the cause.

Cheat Sheet

NVP affects approximately 70–80% of all pregnant women.

35% of pregnant women experience symptoms that are of clinical significance.

30% of pregnant women require time off work to manage their symptoms.

It is estimated that up to 1.5% of women suffer from hyperemesis gravidarum (HG) ¹.

The cause of HG remains unknown, and there is no ‘cure’. Treatment usually revolves around trying to limit the severity of the symptoms.

Milder forms of NVP may end between 12 and 16 weeks; however, those with more severe symptoms and HG often report that though the intensity of symptoms may decrease around this time, up to 60% continue to suffer from nausea and/or vomiting until birth.

‘Morning Sickness’ is an erroneous term as most women experience symptoms of nausea and vomiting at various times throughout the day. Pregnancy sickness is a more appropriate term to use.

The advice to eat ‘little and often’ may help in milder cases of NVP, but dietary changes are often not enough for more severe forms, especially HG.

Similarly, the advice to eat such things as ginger and dry crackers may help milder forms of NVP but is often completely irrelevant to a woman who is struggling to keep any food or liquid down.

Rest is a vital aspect of managing the symptoms of nausea and vomiting as stress and exhaustion can exacerbate symptoms. Therefore, pressure to ‘carry on as normal’ can make matters worse.

Symptoms can become so severe that the pregnant woman may experience dehydration, production of ketones, nutritional deficiencies, electrolyte imbalances, and weight loss.

Admittance to hospital for IV fluids may be necessary.

Prior to the development of IV treatment, HG was a significant cause of maternal death. Although the last deaths in the UK due to complications of HG were in the 1990s, the severity of this condition should not be forgotten or underestimated.

Anti-emetic medication may be prescribed to try and limit the severity of the symptoms. Though none are currently licensed in the United Kingdom for use during pregnancy, many have been used successfully for decades without any known effect on the foetus.

Pregnant women whose weight gain is low in association with HG throughout their pregnancy have a higher risk of preterm labour, babies with low birth weight, and babies who are small for their gestational age. The risks increase if HG is still uncontrolled or untreated in the second trimester.

The emotional stress of prolonged and severe nausea and vomiting is high and support is crucial.

Antenatal depression, postnatal depression, and post traumatic stress disorder may accompany or follow a pregnancy complicated by severe NVP and HG.

HG can be so traumatic that sufferers may request a termination of their pregnancy and/or decide against further pregnancies.

¹. Some studies suggest this is a low estimate given the difficulty in diagnosing HG.↩

Hanging over the edge of my bed, stomach acid trickling from my mouth to the bucket on the floor. It burns my torn oesophagus, my tongue, my cracked and dry lips. I’ve been here for weeks... no months, I think. I haven’t seen a soul other than my husband for days. The last person was a doctor. He made me feel weak and guilty. He signed my sick note and handed me a prescription with dire warnings of unknown risks.

My nose is my worst enemy. I smell everything for miles around, warped and distorted. My poor husband banished to the spare room in between helping me empty sick bowls and change wet knickers – the emetic episodes are violent now, and I can’t control it.

Inside me, the life I so desperately wanted stirs. All I feel is nausea, sadness, loneliness, and anger. I worry we won’t bond. I worry we won’t survive. I hate the thoughts running through my head of termination and miscarriage and just desperately wanting to feel well. I feel guilty. I feel ashamed. I feel scared.

I am weak. I am thin. My muscles are wasting away. I can barely walk now and don’t have the strength to cry anymore, although sometimes I waste precious liquid with tears that soak into the pillow my head has rested on for uncountable hours now.

This isn’t normal, this isn’t joyous or beautiful, this can’t be helped with ginger... this is hyperemesis gravidarum.

(Caitlin, HG Survivor, Author)

Part I

About Hyperemesis Gravidarum

(Especially for Healthcare Professionals)

CHAPTER 1

What Is Hyperemesis Gravidarum?

Authors’ Note: The following chapters are all written with a heavy emphasis on medical research in the hope they will provide both the sufferer and her healthcare team with the information and knowledge they both need to diagnose, treat, and manage her sickness in the best possible way. In order to ensure that these chapters are as accurate and current as possible, academic terms have been used throughout. A glossary of terms has been provided at the end of the book, and a ‘cheat sheet’ of more basic information can be found in the book’s Preface.

Introduction

Hyperemesis Gravidarum (HG) is a condition which causes severe nausea and vomiting during pregnancy, often resulting in hospital admission. Nausea and vomiting during pregnancy (NVP) is considered to affect anywhere between 50–90% of all pregnant women at some point during early pregnancy dependent upon which source is referenced. In comparison to this, the incidence rate of HG ranges from 0.3% to 1.5% of all live births ². However, despite this extreme difference between these two rates of incidence, it is still very difficult to pinpoint exactly when severe NVP should be classed as HG as no definitive clinical definitions of HG exist. In addition to this, NVP is considered to cover a wide spectrum of degrees to which it affects a woman’s life.

The more common experience of intermittent nausea and the odd bout of vomiting leads to the general belief that NVP is manageable through basic lifestyle changes such as getting adequate rest and eating ‘little and often’. And this is indeed enough for many women. But studies show that more than 30% of women require time off work to cope with their symptoms and 35% of all pregnant women experience symptoms which are of clinical significance, with both physical and psychosocial effects.

Both the more common milder forms of NVP and the more severe forms, including HG, typically begin between the fourth and eighth week of gestation, with the peak of severity around 9 weeks. Current research suggests that these symptoms generally end between the twelfth and twentieth week with only a minority of women continuing to experience symptoms beyond the twentieth week. However, a recent large-scale online survey by Pregnancy Sickness Support (PSS) of women who had suffered from HG suggests that though there is a decrease in the severity of symptoms around this time, the symptoms continue for most, around 60%, until the very end of pregnancy. About 20% of women never even had a reduction of severity from symptoms for the full gestation.

It is crucial therefore that the healthcare providers of any pregnant woman are aware of the need to distinguish between NVP which can be successfully managed with lifestyle and dietary changes and the more severe forms of NVP, including HG, which warrant a more tailored approach.

It is becoming increasingly accepted that the previously common term ‘morning sickness’ is erroneous as even those women with mild symptoms often report discomfort throughout the day and night. Pregnancy sickness is a far preferable term. Currently, knowledge and understanding of the term HG and the treatment options available remain uncommon, and women with HG are often left undiagnosed and untreated until their symptoms become severe enough to require a hospital admission.

The difficulty for the healthcare provider lies in the fact that no standard definition of HG exists. There are, however, various clinical definitions proposed in several research papers, two of which are shown below:

Fairweather (Ismail review)

According to the Fairweather criteria, hyperemesis gravidarum should be indicated when vomiting is more frequent than three times per day and there is evidence of weight loss, ketosis, and electrolyte imbalance and volume depletion. The typical onset is considered to be between weeks 4 and 8 continuing through to weeks 14–16, although it is noted that continuation of symptoms into the second and third trimesters is not uncommon.

The International Statistical Classification of Disease and Related Health Problems ICD-9 Code 643 (Ismail review)

This code defines hyperemesis gravidarum as persistent and excessive vomiting which starts before the 22nd week of gestation. It provides further subdivisions, suggesting that these symptoms alone should lead to the diagnosis of ‘mild’ hyperemesis gravidarum, whilst the addition of metabolic disturbances such as carbohydrate depletion, dehydration, and electrolyte imbalance should lead to the diagnosis of ‘severe’ hyperemesis gravidarum.

These two definitions of HG, though helpful, are rather vague and differ quite substantially from each other. And