If you do a Google search for the term “hyperemesis gravidarum”, you will get almost two million results in 0.39 seconds. One of the results is a web page from the US National Organization for Rare Disorders, which characterises the condition as a rare disorder experienced during pregnancy that causes “severe and persistent nausea and vomiting” that may require hospitalisation. A selection of clinical terminology follows, including references to common impacts including malnutrition and dehydration.
Known by sufferers as “hyperemesis” or “HG”, the condition causes intense nausea and vomiting far beyond any expected level within the first trimester of pregnancy. HG patients detail not being able to eat, drink or sometimes move because of the severity of the dizziness, nausea and retching that it causes. Many first-time sufferers spend much of their pregnancies unaware that what they are going through is not normal, while dealing with a medical system that is not properly equipped or trained to deal with it. While some public awareness came after Princess Catherine of the British royal family was hospitalised for HG during her first pregnancy in 2012, there is still a void in knowledge and empathy for people that suffer from the condition.
Vanessa Barnard describes her experience as “harrowing”, in a sombre tone that only hints at the mental and physical anguish the condition caused. A mother of three, she was diagnosed with HG on her third pregnancy but knows she experienced it for all of them.
“I think there comes this stigma, almost, that when you become pregnant and you’re experiencing nausea and vomiting, there’s almost like this expectation that well, you chose this, and this is just a normal part of pregnancy,” she says. Commonly lumped into the “morning sickness” category, it’s common for women and pregnant people to be told that their symptoms are to be expected, and therefore normal.
“For a lot of women, depending on the model of care that they’ve got, they may not get to see the midwife or an obstetrician until later on in their pregnancy,” Barnard says. “And at that point, they’ve just been plodding along and struggling thinking, ‘Oh, this is normal.’”
Around one to two per cent of pregnancies lead to HG, and there is no widely understood cause behind it. Hormonal fluctuations due to the onset of pregnancy are believed to be related to the condition, and medical researcher Marlena Fejzo found that the hormone GDF15 was present in abnormal amounts in sufferers of HG. Other research has linked the hormone beta human chorionic gonadotropin (β-hCG) to the condition. Funding for research into the condition is sparse, despite the number of people affected by it.
“I remember thinking, ‘Something isn’t right, that this cannot be normal,’” Vanessa says of her first pregnancy, when the onset of HG came around the six-week mark.
She experienced “hours upon hours of just relentless nausea” with continuous dry retching triggered by any movement, both of her own body and of anything she saw. The symptoms continued until halfway through her term at 20 weeks. The second time she became pregnant, it was a couple of weeks longer. The third time, it was almost the entire term of her pregnancy which required hospitalisation, steroids and further treatment such as intravenous drips. The steroids allowed Vanessa to eat a proper meal for the first time in three months, and gave her a couple of hours of relief from her symptoms.
She only received a diagnosis in her third pregnancy, and credits part of her treatment in the hospital system down to her background as an intensive care nurse.
“I think it really came down to that point where as soon as I mentioned what I did for work, it was like my word was taken seriously,” Barnard says, describing an interaction with an emergency department doctor who was refusing to give her IV fluids despite her significant level of dehydration.
“And it was at that point where all of a sudden I got everything that I wanted,” she says.
For so many women, not being believed is the norm.
“So many women get it but it’s not talked about that much,” Rhiannon Shepherd says of HG – she describes it as being put into the “bucket of women’s pain”. She sketches her experience as an “all-consuming project to manage this illness,” with her partner and family acting as carers while she was largely incapacitated. Her experience of HG in her first pregnancy began at the four to five-week mark, and continued throughout the majority of her pregnancy.
“It hasn’t really been a joyful period… This baby is so loved and so wanted, but when you’re sick, it’s so horrible,” she says.
For some women, HG affects them over the course of their entire pregnancy. For others, it can ease around the 20-week point, halfway through a full-term pregnancy. Each woman interviewed for this piece mentions the “death zone”, a term used among sufferers of HG to detail the rock bottom period that usually happens in their first trimester, where they cannot swallow any food or water without vomiting, and often are bed-bound for several weeks.
There is no recognised breakdown of the extent or severity of HG: despite being a clinically established condition, there are only rough estimates as to how many women and pregnant people it affects worldwide.
Even for those who work in the medical profession, there appears to be a gap in training and understanding of HG. Kate Thuesen suffered from HG over the course of her two pregnancies, and it is something her profession as an obstetrics-specialized general practitioner (or GP obstetrician) did not prepare her for.
“My knowledge was probably what the standard is, which in retrospect and on reflection is very little,” she says. “And I think it’s a part of the problem: that I don’t think there’s much true understanding about HG and how to treat it and how to recognise it.”
Though some Australian health authorities such as NSW Health, offer information on HG and its impacts, testimonies from those affected suggest there is a gap in understanding and training for medical professionals to treat the condition.
Dr Wendy Burton, the chair of the Royal Australian College of General Practitioners’ Antenatal and Postnatal Care Specific Interest Group, said in answer to questions from Missing Perspectives that the condition would “benefit from having a higher profile for those affected.”
“It is important that GPs are aware of the impact hyperemesis gravidarum has on those who are pregnant,” Burton says, and notes that the National Pregnancy Care Guidelines have little to say on the topic.
Current methods of treating HG include the prescribing of antiemetic medication ondansetron, intravenous drips for dehydration and malnutrition, and in more serious cases the use of steroids.
Thuesen sees the lack of medical knowledge and effective training on the topic as the system “under-recognising and under-treating” her condition. She has been told her form of HG is one of the worst, requiring eight weeks of in-patient therapy and experimental medication just to keep her and her baby alive.
“My first pregnancy was horrendous. Unfortunately, I didn’t really recover,” she says. “But with sort of extreme suffering, largely physical suffering that, you know, after so many months and realising that you’re not going to get better, it becomes mental suffering as well.” She is currently pregnant with her second child.
“And unfortunately, I think, because there’s not a great understanding about management and recognition, despite having a PICC [peripherally inserted central catheter] line inserted… and having daily infusions and steroids and everything else they could possibly give me, I continue to deteriorate,” Thuesen says of her first pregnancy. She compares the experience of HG more than once to physical torture.
Vanessa Barnard echoes her concerns “A lot of GPs just don’t understand hyperemesis and they don’t understand the management of it. And, they’re really reluctant to prescribe some medications,” she says. Barnard found it difficult to access the antiemetic medication ondansetron, a common treatment for hyperemesis, when seeing a GP that was not her regular doctor, despite using it before.
Advocacy group Hyperemesis Australia offers information, resources and support for sufferers of HG. They note that “Stigma surrounds the use of medication in pregnancy – a vital option for many sufferers – leading to guilt, shame and prolonged physical suffering for those who are refused treatment.” Several Facebook groups for people who have experienced HG also offer support and advice to those who feel like they are going through hell on their own.
For Rhiannon Shepherd, the likelihood of suffering through another pregnancy with HG has made her reconsider having more children. “I don’t know how we would do that. It would definitely be a really big decision if we were to try and get pregnant again,” she says, noting that her partner had to become a caretaker while she was unwell, alongside his full-time job.
“It comes back to this idea that pregnancy is a choice that women are expected to do and expected to put up with,” she explains. “And people don’t really understand that wanting and being excited for a baby and the choice that comes with pregnancy isn’t the choice to have HG.”
The choice also doesn’t extend to the pressure hyperemesis places on their working life, particularly financially. The three women interviewed by Missing Perspectives all tried to remain at work for as long as possible, despite the condition making regular work almost impossible.
Currently, government funded parental leave doesn’t start until a parent gives birth, which means that sufferers of HG are unable to access further leave during their sickest points. Sick leave, many noted, had already been exhausted.
For many such as Barnard, who was left with “almost post traumatic stress” following her pregnancies, the experience of hyperemesis can leave a permanent mark on their mental health. “By the end of the pregnancy, it was safe to say that I was physically, emotionally mentally just at breaking point,” she says.
The final line of the Wikipedia page for hyperemesis gravidarum details how just six grants for research into the condition were approved in the 15-year period from 2007 to 2023 in the United States. In Australia, the NSW government committed $1.2 million last year to fund research into hyperemesis gravidarium, alongside a further $15.8 million to be spent on clinical care, education and service integration. Alongside International Hyperemesis Gravidarum Awareness Day on 15 May, it is hoped that investments such as the NSW funding will enable better understanding and treatment of the condition.
Kate Thuesen has since been able to access effective treatment for her ongoing pregnancy through specialists such as Dr Sandra Lowe, an obstetric physician at the Royal Hospital for Women in Sydney. Dr Lowe was unavailable to answer questions from Missing Perspectives, but Thuesen says her treatment has been life-changing.
“I want women to know that there is hope as well,” she says, crediting proper management of her condition to saving her life and ensuring that the trauma and ongoing mental health concerns from the illness that she experienced in her first pregnancy are not as difficult in her second.
“I think a lot of women could actually live a much better quality of life and have a lot less trauma from their pregnancy if they had the same experience as I had in my second pregnancy,” she says. “But there is hope.”