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'A living hell': The pregnancy condition leaving women bedridden and unable to function

By Heidi Krause|

Imagine that all the things you enjoy doing have been taken away. And in their place all that is left is crippling nausea, constant vomiting, food and smell aversions, anxiety, depression and suicidal ideation.

Now, imagine all of this is happening to you because of what the world tells you is the most wonderful that will ever happen to you จC pregnancy. This is what it's really like to experience Hyperemesis Gravidarum (HG) - a complication of pregnancy in which sufferers experience extreme levels of nausea and vomiting.

Sydney mother-of-two Caitlin Kay-Smith suffered from HG with both her pregnancies and tells 9Honey Parenting that it was "the worst" time of her life. "I've never been so debilitated by anything, and my mental health suffered. I would cry hysterically, begging for my husband to end it all for me. That's how bad HG was for me."

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Caitlin suffered from HG with both her pregnancies
Caitlin suffered from HG with both her pregnancies (Supplied)

'Vomiting uncontrollably 20 times a day'

"I was hospitalised 17 times, lost 15kgs and was on six different kinds of medication to get me through the day," she reveals. "I was vomiting uncontrollably 20 times a day. I tore through my oesophagus and broke so many blood vessels in my face that I permanently had two black eyes and passed out in public four times."

Caitlin was 30-years-old, newly married and after having lived out of home for a decade, she and her husband were forced to move back in with her parents.

"He had to work and I couldn't be left alone," she explains. "I had to shut down a business I'd spent years working to establish because at four months pregnant I just couldn't get out of bed."

"I refused to refer to my unborn baby as anything other than 'The Parasite' because there was nothing good about being pregnant with her จC just suffering."

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Caitlin was bedridden and vomited 20 times a day while pregnant
Caitlin was bedridden and vomited 20 times a day while pregnant (Supplied)

The worst part was, that no one believed her and she never received an official diagnosis of HG from a healthcare professional. After presenting to ED at nine weeks pregnant with constant vomiting and weight loss, she took to Google to try and make sense of what was happening.

"I read what little I could find and diagnosed myself จC an incredibly common experience for HG sufferers. Next time I presented to ED I told the staff that I thought I was suffering from HG จC one out of the seven people I spoke to knew what it was, she agreed with my self-diagnosis and that was that."

While Caitlin says her entire first pregnancy was littered with "disappointing, degrading and downright ridiculous" interactions with hospital staff, a few stand out:

  • "The obstetric registrar who told me to 'think happy thoughts' as a cure for 30-weeks of non-stop vomiting and nausea. He offered this in place of IV fluids and a script for antiemetics."
  • "The psychiatrist who told me that there was no mental health element to pregnancy or morning sickness and therefore he couldn't help me. He suggested that, at 26-weeks pregnant, the only solution to my physical suffering was for the pregnancy to end. He then ended the conversation."
  • "The ED doctor who strongly suggested to my husband that it was far more likely I was suffering from an eating disorder or subconsciously didn't want my baby and was sabotaging the pregnancy by inducing my illness."

    If the physical toll of HG doesn't sound bad enough, then consider the mental anguish.

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Caitlin
Caitlin (Supplied)

'My mind turned against itself'

"For most of my first pregnancy I passed the time by imagining how much better my life would be if I had just chosen to abort my much-loved and longed for baby; or if I'd had a miscarriage; or if I just simply ceased to exist," Caitlin explains.

"I was so very sick that my mind turned against itself and went to a place that was so dark I was terrified of being left alone with my thoughts."

She adds: "Anyone who has contemplated suicide or abortion will tell you that even if that thought is only fleeting and quickly quashed, it changes you. To this day, I look at my beautiful children and wonder how I could have imagined ending the pregnancies that resulted in them. I look around at my full and happy life and wonder how I could ever have wanted to leave it."

"But that is the legacy of HG จC it changes you forever in ways that you will continue to grapple with long after pregnancy is over. And I am one of the lucky ones."

READ MORE: The reality of Hyperemesis Gravidarum

Caitlin
Caitlin after the birth of her daughter (Supplied)

'Life-threatening if left untreated'

In fact, HG had such an impact on Caitlin, whose children are now four and two, that she decided to start a charity - Hyperemesis Australia - to help other women survive "the worst nine months of their lives."

"Every day I speak to women whose experiences, while totally unique, also totally mirror my own," she shares. "They feel beaten down, invalidated, humiliated, ridiculed and broken by a system that is, often, intent on denying that the condition they're living with even exists.

"They have to fight tooth and nail to get a bag of fluids, let alone the prescription medication they need to get out of bed. This is not the introduction to parenthood that anyone deserves and the reality is that it doesn't have to be this bad for any of us."

Regular pregnancy sickness affects around 70 to 80 per cent of pregnancies and often goes away after the first trimester. HG is a far more severe condition and can be potentially life-threatening if left untreated.

"Everyone tells you that some nausea and vomiting is a sign of a strong pregnancy... but what is within the realm of normal? There is very little education about the tipping point and knowing when you need medical intervention. In my own experience, by the time I sought help I was so dehyrdated and malnourished, by then it was so difficult to reverse these things."

The ramifications and physical toll can be so severe that some women require feeding tubes or go into organ failure or have cardiac problems - and the long-term impacts are only just starting to be measured.

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Caitlin had a more positive experience in her second pregnancy as she was educated about HG
Caitlin had a more positive experience in her second pregnancy as she was educated about HG (Supplied)

Caitlin, who is sharing her story as part of COPE's The Truth campaign, says that while official statistics estimate that one to three per cent of women will suffer from HG (350,000 births a year), the actual number is much higher.

"I think it's more like 10 per cent", she tells 9Honey Parenting. "The Australian healthcare system simply isn't capturing the data because so many women are admitted under 'Dehydration' or 'Acute mental; distress' and there simply isn't enough knowledge or education about HG. It's a huge oversight."

And so Caitlin has made it her personal mission to not only educate HG sufferers that there is help available, but to also educate the healthcare system.

And while there is no cure, there are a number of different anti-nausea medications along with steroids and anti-depressants, but a lot of health professionals are nervous about prescribing them, plus they aren't listed on the Pharmaceutical Benefits Scheme.

"The big issue is, that some of these medications are expensive and it can be difficult to get scripts. The costs really do add up and many women aren't able to work - so there are also huge financial ramifications."

"Some people who are already struggling will have to choose whether to take a $6 tablet to stop the vomiting or put food on the family table. No Australian should be forced to make that decision."

According to Dr Nicole Highet, the executive director of COPE (the Centre for Perinatal Excellence), Hyperemesis is a very serious illness and the emotional and mental health impacts are often not fully realised.

"In our research, we found that HG was so debilitating and it really did impact every single area of a sufferer's life. Some women who had been through IVF to conceive, were even considering termination because it was just that unbearable," she explains.

"And it's compounded by the fact that health professionals and the community don't understand it. They brush it off as morning sickness. And when that happens, it makes them feel even more isolated."

"Imagine trying to work or care for other kids when you have Hyperemesis? Think of your worst hangover and having to work every day or look after other children. People are often bedridden because they can't move. Women said it stripped them of their ability to feel human and function as a human being."

COPE together with Caitlin and Hyperemesis Australia are working together to raise awareness of HG and have developed specific resources to support the emotional and mental health needs of those suffering.

"The feedback that comes in around our Peer Support program that partners a sufferer with a survivor is amazing," says Caitlin. "We can't cure it for you or convince your doctor, but here is someone you can cry to on the bad days or advise you what fizzy drinks are the best to get in."

You can find support at cope.org.au or at Hyperemesis Australia

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