What is Hyperemesis Gravidarum?

I spent quite a lot of time thinking about what I should write about in my first blog post.  So many different topics came to mind, but I decided to write about a pregnancy-related illness I have personally experienced.  An illness that is little known and little understood in our community.  When I was first diagnosed with hyperemesis gravidarum (HG) at about fourteen weeks in to my first pregnancy, my obstetrician wrote down this diagnosis in my file and I asked what it was - I had never heard of it before.  Ten years down the track, I am now very much aware of the HG journey having two HG pregnancies myself and gone on to support my two younger sisters as well as many other women through their own HG journeys.  I want to bring awareness about HG through this blog post, as many women I meet have clearly experienced this illness but remained undiagnosed throughout their pregnancies.   

Last year, Hyperemesis Gravidarum (commonly known as HG) hit the headlines when Kate Middleton, Duchess of Cambridge was admitted to hospital for what is commonly known as severe morning sickness.  
Never heard of HG?  You are not alone!  
HG affects a small number of pregnant women, and is often described as prolonged unrelenting nausea and/or vomiting during pregnancy that significantly inhibits the intake of food and fluids.
How do you know if you have HG?
# You have lost more than five percent of your body weight (commonly more than ten percent)
# You have become dehydrated and have ketones in your urine
# You experience nutritional deficiencies
# You have metabolic disturbances
# You have difficulty and stress in undertaking daily activities 
(source: http://www.helpher.org/hyperemesis-gravidarum/)

So what is all the fuss about?  For those women affected by HG it is not only physically debilitating, but the emotional and psychological effects can be long lasting.  This is often an aspect of HG that isn't talked about.  The woman's physical needs may be addressed, she may take medications and receive hydration, attend hospital and have her baby's growth and development monitored.

However, there is so much more to the experience of HG than this.  Women are unable to care for themselves and their children, their relationships may become strained, and many woman talk about their friends and family who stop visiting.  They are unable to attend work, participate in family dinners, look after their home or even take a shower.  Many women find being totally cared for demoralising.  

One of the most challenging aspects of a HG pregnancy is the lack of awareness amongst health professionals.  Women commonly talk about feeling like their doctor does not listen to them; they are given unhelpful advice, such as encouraging them to go for a walk, take ginger, or that it's all in just their heads and pull themselves together.  Many health professionals feel ambivalent about treating HG aggressively and are reluctant in prescribing long term medication.  Therefore, women's experience of the health system is often negative, compounding their feelings of helplessness and lack of control over their own bodies.  Some women feel unable to continue with their pregnancy and make the decision to terminate.  Depression and anxiety is common among survivors of HG.   

What is the experience of HG like?  I asked women on a local HG Facebook support page to contribute... 

"I was so depressed and disconnected that I found it impossible to bond with my baby. When I told my midwife, at my 17 week appointment how I was feeling, I was hospitalized for depression and not allowed to leave until I spoke to a psychologist. Even though I spent the entire eight hours vomiting, no one seemed to believe me that it was the sickness that was causing my depression. I went undiagnosed my entire pregnancy and only realised I had a real thing when I found HG support on Facebook. (It was the) hardest nine months of my life" - Emma Storer.

"I felt like I was in a deep, dark hole and no matter how many times I asked for help no-one cared, no-one believed me. All I did was throw up, cry, and try to sleep; occasionally eat and drink, then throw up again. Since very few 'Doctors' believed me and witnessed my struggles, my HG was put down to being stress related.  Most of my stress was about my son because he felt so lonely, so bored; I just wanted to take him out and have fun but I couldn't, I was always snapping and yelling at him. That made me dig myself even further into my hole of depressing darkness" - Ramani Parkes.

"Friends stopped coming around, they didn't understand. I had to resign from a job I loved as I was unable to get out of bed. This cut me off from the world and I felt alone. It affected me both emotionally and financially which left me feeling like a failure. Why couldn't I 'do' pregnancy like millions of women do everyday? I suffered severe postnatal depression once my twins were born, and I feel I missed out on a lot of their first few months of life, it is all a blur. That haunts me to this day" - Lauren.

"HG made me into a negative person who never felt understood. I feel like an entire block of my life never happened, the months I was pregnant are just blank" - Ali.

"My first un-diagnosed HG pregnancy: incredibly isolated and misunderstood, simply BROKEN. The 23 weeks of HG endured in that pregnancy are a blur; I don't remember much about events that happened at that time, just struggling to get through each day. I was sick from seven weeks, (so when I) announced my pregnancy to my work mates at fourteen weeks, I got responses like - 'Oh thank God, we thought you had a terminal illness or something', because of how awful I looked on the days I managed to turn up to work.  I don't think I can emphasize enough how alone and isolated I felt. 
While pregnant with HG, my husband was working inconsistent shifts in the mining industry, (and found that) being home alone was just too much.  I am forever grateful to my sister and her husband who had a challenging newborn and were dealing with my sister's gall-bladder attacks, and still helped me and let me stay at their place (while vomiting).  I would not have gotten through it without their support" -Wendy.

"Seven months on I still wonder if it was all in my head. I know it wasn't, I vomited constantly for 35 weeks. I lost weight instead of gaining. I wished to die and for it all to end. I have burst blood vessels from vomiting. I will have three front teeth removed next year thanks to the vomiting. I lost friends and I could have lost my job. I wonder if my daughter will be an only child because the thought of going through it again brings me to tears. But due to a complete lack of understanding from friends, family (from) the medical professionals I dealt with, I still have to remind MYSELF that I'm not crazy. HG can cause (Post-traumatic Stress Disorder) PTSD. I wouldn't wish HG on my worst enemy" - Clare Holmes.

"(My) work place and family didn't understand what I was going through. I was depressed and lonely and constantly worried about how my baby was coping" -
HG survivor and mama to 10mth old.

It is hard to ignore the heartbreaking stories of the women who have shared with us just a small glimpse of their experiences, the emotional and psychological impacts are clear.  Unfortunately, there are no statistics kept on the number of women who develop postnatal depression after the birth of their child, or how many women complete suicide in the first year postpartum.  
So, what can we do to support women with HG?  What if you suspect you are experiencing HG but are not sure where to get support?  What if you are healing from your HG experience and looking for information and understanding?  
Perhaps start with the following resources:
Websites:
Hyperemesis Education and Research - Website
Hyperemesis Gravidarum Support Australia (closed Facebook page)
Books:
Beyond Morning Sickness: Battling Hyperemesis Gravidarum 
Mama Has Hyperemesis Gravidarum  (But Only For A While)

What about Doula support for women experiencing HG?

A Doula is a woman who is trained and experienced in childbirth, who provides continuous emotional, physical and informational support during pregnancy, birth and throughout the early weeks of parenthood.  There are countless benefits of Doula support for women experiencing HG.  

For many women with HG, towards the end of their pregnancy they are exhausted, emotionally drained and just want their pregnancy to end and to meet their baby.  Some women choose, or are encouraged to have an early term induction while others wait for labour to begin spontaneously.  With very few options for a 'continuity of care model' in the Australian maternity system, when a woman goes in to labour she is often cared for by midwives who have never met her.  They have no connection to her story and may not understand the HG journey. 

Being supported by a Doula, however, who has journeyed with the woman during her pregnancy can bring comfort to the labouring woman.  The HG journey often strips away the confidence of the labouring woman, and many feel their body's have 'failed' them through pregnancy and feel frightened about their ability to labour and birth.  Having a known and trusted support person provides space for the labouring woman to feel listened to during birth, for her fears and doubts to be acknowledged, and for gentle encouragement and support to be present. 
The relationship developed means the Doula has knowledge about small details that can make all the difference during labour; for example, any food or smell aversions, the type of hydration that can be tolerated, or how long the woman can be active before needing to rest.  With good support and patient care providers, there is no reason the majority of women with HG can not have empowering and beautiful labour and births.  Doula support provides the best possible opportunity for the woman to feel supported and in control of her experience.