Understanding Hyperemesis Gravidarum
If you’re a fan of Kate Middleton or Amy Schumer, then you’ve probably heard the term, hyperemesis gravidarum (HG). In a nutshell, it’s the most severe form of pregnancy sickness. Here to help us understand the condition and why pregnant women with HG are suffering more than they should is Caitlin Kay-Smith, founder of Hyperemesis Gravidarum Australia and mama of one.
For many years, Caitlin Kay-Smith lived her life as a successful publicist who worked in publishing. Self-described as terminally single through nearly all of her twenties, she always knew deep down that she wanted to be a mother and feared that it might never happen for her. Luckily, the stars aligned and she met Roland. They fell deeply in love, got married and began trying for a baby.
Photographer: Ben Sowry
While Caitlin’s partnership wasn’t unusual, her pregnancy certainly was. She suffered from hyperemesis gravidarum (HG) and it derailed more than just her pregnancy. It affected her work, her relationship and her mental health.
“I started throwing up at just over four weeks and was hospitalized for the first time at nine weeks. The morning sickness came on pretty quickly and with a vengeance I could not have anticipated.”
What exactly is hyperemesis gravidarum?
Caitlin explains, “It’s one of a range of pregnancy sicknesses that impact the mother and, generally, not the baby. Imagine pregnancy sickness on a spectrum. On one end you have morning sickness, which is very mild, doesn’t interfere with your daily life too much and subsides after the first trimester.
In the middle, you’ll find nausea and vomiting in pregnancy (NVP), which is more intense than morning sickness, can last beyond the first trimester and will impact your ability to function normally.
At the far end you have HG, the most severe of the pregnancy sicknesses. HG affects every facet of your life, lasts well beyond the first trimester (often until delivery) and makes it almost impossible to function normally. It’s characterized by intractable vomiting (between 5 and 100 times a day), constant and unrelenting nausea, and all manners of complications resulting from chronic dehydration and malnutrition. Women with HG suffer a range of issues from the very mild – like the pain of vomiting countless times a day to being unable to eat – to the very severe – multiple organ failure, feeding tubes, nephrostomy bags and indefinite hospitalization.”
The problem with having hyperemesis gravidarum is that it’s still not that widely diagnosed. Caitlin recalls feeling frustrated that she couldn’t find an answer for her extreme sickness.
“Like a lot of women with HG, I found myself being treated as a bit of a medical mystery. Once I passed twelve weeks and people started telling me I ‘really should be better by now,’ it became clear to me that I had crossed over into unchartered territory. When I hit 15 weeks, and was being hospitalized every few days, I decided to take matters into my own hands and suggested to anyone who would listen that I thought I had HG.
It took a while before anyone took me seriously, and it really only clicked for people when I was about 22 weeks and still waving vomit bags around in emergency rooms. Sadly, this is a common experience for women with HG and unfortunately makes getting the correct treatment plan difficult.
I needed for everyone to stop saying it was all in my head, it was bulimia, it was me harming my baby, or any of the other insane things that were said – and instead say, ‘You’re sick, I can’t take it away but let me try and make you comfortable.’ That’s all. It’s such a simple thing but it would have changed my life.”
When asked more about how HG affected her mental health, professional life and relationship, Caitlin said, “I have a longstanding history of depression, so I thought I knew all the tricks for keeping myself above water. But I was dead wrong. I’ve never been chronically ill before – and HG is a chronic illness like any other. There’s a lot of focus on maternal mental health once baby arrives, but perinatal mental health is just is important.
To say it affected my career massively would have been an understatement. I was working as a freelance publicist as I had for many years, and I had to stop work when I was about five months along – though I probably should have stopped way earlier given the amount of time I spent in hospital at that point.
Quickly after becoming pregnant, my husband became my full-time caregiver. I would not have survived it if he hadn’t put everything aside in order to keep me going. It was an enormous burden, and while he was happy to do it because he loves me and loves our baby, I think we will feel the after-effects of the inequity it caused for a while to come.”
Today, Caitlin is the mother to a beautiful and healthy baby girl named Monty.
Photographer: Roland Kay-Smith
She has channeled her knowledge, research and sympathy for women suffering from HG into her non-profit organization, Hyperemesis Gravidarum Australia, which is part of the International Collaboration for Hyperemesis Gravidarum Research – a group of patient organizations, researchers and clinicians working on understanding HG and improving standards of care.
“We are the one-stop-shop for anyone suffering pregnancy sickness. Along with our website, which is full of resources to get you through your pregnancy, we have professional resources and are working with each state-based health department to implement our protocols as standard nation-wide. We’re also in the process of building our peer-to-peer support network, so that current sufferers can be buddied up with a survivor so that they have someone on hand 24/7 as support. We are also working on ensuring women get effective treatment plans. We believe that the earlier treatment is started the less likely a woman is to require more invasive treatments.”
When asked about any tried and trusted tips for those experiencing HG, Caitlin added, “Shout from the rooftops until you get the care you deserve. Get a medication plan and stick to it religiously. Change doctors if they don’t know what HG is. Outsource all domestic duties if you can. Accept the help your friends and family offer. Come and talk to me at HGA. Talk, talk, talk, until someone listens. HG is an illness – if you weren’t pregnant and you were this sick you wouldn’t rest until someone helped you. This is no different.”
Find out more about the global work Hyperemesis Gravidarum Australia does and the support they can provide.
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