“We maybe don’t have a cure and the meds might be hit and miss, but it is possible for HG sufferers to receive empathy and care – and fluids!”
That desire to ensure women suffering from hyperemesis gravidarum (HG) are taken seriously and receive a standard level of care, regardless of where they live, their background or socio-economic status was one of the driving forces behind Caitlin Kay-Smith’s decision to found the charity Hyperemesis Australia.
Ms Kay-Smith suffered HG for the first time when she was pregnant with her daughter in late 2017-18.
HG is characterised by severe and persistent nausea and vomiting that impacts the daily life of sufferers. It often leads to substantial weight loss and dehydration, with sufferers unable to eat or drink properly.
Ms Kay-Smith began struggling with the condition when she was about seven or eight weeks pregnant and was hospitalised for the first time at nine weeks.
She spent the next 30 weeks moving between her bed and the emergency department, never really receiving the care she needed and deserved – and never being told that there was actually a name for what she was experiencing.
“If I had more energy, I would have been enraged,” she said.
“I was surprised I was experiencing this thing that everyone was telling me was absolutely normal or would end soon.”
In the late stages of her pregnancy, Ms Kay-Smith found a Facebook group of fellow sufferers and UK charity Pregnancy Sickness Support – and realised that she wasn’t alone.
“That was a light bulb moment,” she said,
“There was a name for what was happening to me … and it wasn’t OK and it wasn’t normal.”
After the birth of her daughter, Ms Kay-Smith turned her thoughts to establishing an Australian hyperemesis charity.
Having emailed a “laundry list of the ways they failed me” to her delivery hospital – resulting in changes to how the hospital managed HG – Ms Kay-Smith realised it was possible to make a difference.
“That made me realise that for every person I had met along the way who had been wilfully dismissive … there were … people who just didn’t know any better,” she said.
Hyperemesis Australia was set up in August 2018 and gained charitable status in January 2019. Since then, Ms Kay-Smith has worked to educate people about HG and empower sufferers and their loved ones to advocate for better care.
“So many of us are told this is a normal thing that happens,” she said.
The charity also provides advice on treatment, diet and nutrition, mental health, postpartum recovery and how to support someone with HG.
Ms Kay-Smith said sufferers often reach out “in the depth of despair” asking for advice.
They are directed to the Society of Obstetric Medicine of Australia and New Zealand (SOMANZ) guidelines on HG.
While the guidelines are “hard for practitioners to dismiss”, they are not used by hospital, obstetrician or GP around the country.
Ms Kay-Smith said Australia needed statewide guidelines on medications for HG and treatment options such as IV fluids – which sufferers regularly report being refused – to ensure a standard level of care.
She also wants an end to the “doubt or scepticism” women face when presenting to hospitals, GPs or pharmacies for treatment, and for it to be acknowledged that HG is a condition that needs a significant level of care.
“I would like to get to a place where no woman changes the number of children she has because of HG,” she said.
“A place where no woman feels the need to end the pregnancy because of HG.
“These are not huge asks.”
Ms Kay-Smith said the HG community was “very realistic” and wasn’t expecting a magical cure to be found, but just wanted to be heard and properly cared for.
“We are just asking for a bag of fluids.”
Details: https://www.hyperemesisaustralia.org.au
