Imagine having an intense gastro-like illness for months on end, while also being pregnant.
That's how Tamara Grantham describes the pregnancy illness hyperemesis gravidarum — also known as HG — which can leave pregnant women debilitated, dehydrated and unable to eat or care for themselves.
"The only way I've found that I can describe it is gastro without the runs basically, just constantly throwing up," Ms Grantham said.
"As soon as I opened my eyes, I was at a toilet, a bucket."
Nausea and vomiting like this is considered hyperemesis gravidarum when it lasts for weeks or months during pregnancy, stops women from eating and drinking properly and severely affects their daily life.
While the condition is said to affect around 1 per cent of pregnant women, some experts believe the true figure is higher, given anecdotal reports and a lack of research in the area.
In a 'dark place'
For Ms Grantham, the condition did not ease until about 32 weeks into her pregnancy. She had to stop working and dropped an unhealthy amount of body weight.
She also had to drive herself to Darwin's public hospital to get regular intravenous fluids, while taking medications for nausea and vomiting that made it difficult to drive.
"A lot of the time my only reprieve was sitting in my bathtub, so I'd sit there for 8 hours, if I didn't have my son at home," Ms Grantham said.
"It was really scary because honestly, I didn't want to keep going.
"I was in a really dark place because I couldn't be a mum, I just lived on my couch."
Melbourne-based obstetrician and gynaecologist Dr Rangi De Silva had HG herself, lasting until she gave birth to her son.
The severity of her own illness took her by surprise, despite knowing that her mother had struggled with the same condition in Sri Lanka.
"I couldn't really feed myself, most days I couldn't really shower myself, I couldn't really get out of bed so my mum and my husband were really caring for me," Dr De Silva said.
"It was a real eye-opener to be so helpless and need that intense support."
Despite having lengthy fertility treatment to fall pregnant, the debilitating illness forced Ms Grantham and her partner Hayden to consider termination — in the end, they decided against it.
"We tried for two years to have our daughter, we went through a year of fertility treatment and then we were so lucky to fall pregnant with her and she was so wanted," she said.
"I remember saying to my partner I can't do this, I'm done, so we went to the GP."
That is not an uncommon experience among women who have experienced HG, according to Dr De Silva.
"It can be a really harrowing decision but something a lot of people do definitely do contemplate at some point if not actually go through with," she said.
Despite receiving the best care possible herself, including early intervention with intravenous fluids and medication, the whole experience was traumatic for Dr De Silva.
She said some women end up with post-traumatic stress disorder after enduring HG and — like herself — become reluctant to have any more children because of the experience.
Also a University of Melbourne perinatal researcher, Dr De Silva said HG was one of many areas in women's health that do not get the support they deserve.
"There's a lot of women I think who suffer in silence," she said.
More GP education needed
Bree McDonald, a registered nurse in Darwin, is currently pregnant and suffered with the illness during her first trimester before it started to ease.
"I started vomiting continuously and it went pretty much from one to two times a day to six times a day and throughout the night as well," she said.
She had trouble finding an understanding GP, to begin with.
"I was definitely sort of ignored that first time I went to the GP," Ms McDonald said.
"Everyone tries to advise you to drink water, snack on biscuits and that sort of thing — when you're only in there for 10 or 15 minutes, I don't think they can understand the severity of how you're feeling."
Ten weeks into her pregnancy, Ms McDonald was admitted to hospital for 24 hours of intravenous fluids and medication to ease the nausea and vomiting.
"I don't think I realised how dehydrated it was making me and how lethargic, and how hard it was to watch Angus while being so sick," she said.
In the beginning, Ms Grantham and her husband Hayden also felt ignored by doctors but were relieved when they eventually found an understanding GP.
"They really, really helped, she was getting nowhere with the other GPs," Mr Grantham said.
"Listen to the pregnant girl, she knows what she's talking about.
"When it's not morning sickness, it's not morning sickness."
Dr De Silva said medical professionals should ask more questions.
"I've definitely seen it in my practice and I think when you delve a bit further you see it even more," Dr De Silva said.
"By the time we see them in hospital, it can be much much later on, so they may have been suffering from it for a number of weeks."
Financial strain 'a big shock'
For the Grantham family, it wasn't just Tamara's body under stress.
"For us, it was a big shock, my partner was taking on extra hours at work, any extra overtime to keep our house going but I also needed him here because a lot of my family's in Queensland," she said.
"Financially, it was really stressful."
Recalling the entire experience brings Mr Grantham to tears.
"At the same time I just wanted to be home with her to help her, so I had to pick one or the other and it's just really hard," he said.
Ms McDonald was unable to continue working in hospital wards with the illness and now consults from home.
She also had HG with her first pregnancy and was forced to take a large amount of time off without pay.
"It's unfortunate because your child's not even here and you're using up that leave, " Ms McDonald said.
Dr De Silva was also forced to stop working for the duration of her pregnancy.
"It can affect many aspects of your life," she said.
"I was on one of the medications that made it really difficult for me to drive, I didn't feel safe driving because I felt quite dizzy and a bit unsteady on my feet.
"Also I was quite frequently fainting, unfortunately, so that wasn't safe."
Research and at-home support
Dr De Silva said the onset of HG also happens in the early stages of pregnancy, before 12 weeks, when women have not yet revealed their pregnancy to their employer or visited a doctor.
She said women living in remote areas or from non-English-speaking backgrounds were particularly vulnerable when dealing with the illness.
In the Northern Territory, where Ms Grantham and Ms McDonald live, there is no dedicated funding for the condition or at-home support.
The NT health department said in a statement to the ABC: "The majority of care for this issue is provided to women in primary (GP) and community care settings.
"A very small number of women may require acute care, such as an admission to hospital for monitoring."
Ms McDonald said at-home support for women with HG would be a huge help, especially because many women living in Darwin have families elsewhere.
"Someone mobile that would be able to come to your house, if you're so sick and you can't move or you can't drive," she said.
"There's so many families that are FIFO families or they're defence families."
"A lot of people are up here on their own or they're away from family and it's such a transient place, so it's been definitely hard."
In November 2020, the NSW government announced it would put $17 million towards education and research into the condition, including a $1.2 million research grants program — no recipients have been chosen yet.
Dr De Silva said more research on diagnosis, causes and how to improve the available medications and treatment was needed.
She plans to do her own research on healthcare providers' perceptions about the best treatment and management of HG this year, in collaboration with support organisation Hyperemesis Australia.
She also wants the confusion with morning sickness to end.
"That's really common," she said.
"I think most people with HG hear the words morning sickness and find it triggering.
"It's not just in the morning and morning sickness implies that it's just very mild and easy to brush off and it may be a 'normal part of pregnancy', but it certainly isn't."
