Chances are most of us have a grandparent or another older family member who had rheumatic fever as a kid or may have died of its untreated sequelae, rheumatic heart disease (RHD). It was relatively common in Melbourne and Sydney during the Depression years, but slowly became a forgotten disease as standards of living improved.
Not so for Aboriginal and Torres Strait Islander peoples and Maori and Pacific Islanders – particularly women in remote and regional Australia. Each year, up to 3 per 100 Aboriginal women in the Northern Territory journey through pregnancy with RHD. In NSW, it’s more prevalent among Aboriginal women (especially western NSW), Maori and Pacifica and women migrating to Australia from resource poor countries.
Geri Vaughan and Vicki Wade uncover the realities of RHD today.
Complex disease, complex solutions?
RHD diagnosis is usually confirmed by an echocardiogram, often (but not always) with a history of rheumatic fever (RF) as a kid.
RHD can be and often is missed in pregnancy: not a good thing, particularly where a woman with undiagnosed RHD risks complications in a heart that is already working harder to get enough blood for mother and baby. Cardiac decompensation is not the sort of thing you want for any woman giving birth!
On a cheerier note, many women with RHD have relatively uncomplicated pregnancies: the main thing is not to miss diagnosis and to get the right care during pregnancy. “Preliminary findings from a four-year study of the impact of RHD in pregnancy* highlight how important it is to ask the right questions, and for a model of care where we all work together”, says Geri Vaughan [right], project coordinator on the study who is now completing her PhD* on RHD in pregnancy and the challenges for health services. Apart from antenatal care, pregnancy gives a terrific opportunity to engage (or re-engage) with women who may have been treated as a kid for RF/RHD – or any other cardiac disease, for that matter. Management of RHD during pregnancy will vary, but should include assessment and echocardiogram. If secondary prophylaxis (the 3-4 weekly bicillin injections to stop worsening RF/ prevent RHD) is prescribed, it’s safe to continue these in pregnancy. Women on anticoagulation medication need particular care and monitoring.
Principles of maternity care that promote best outcomes for mum and bub apply – even more so – for women with RHD. Early assessment, regular antenatal checks in a culturally safe environment, appropriate management and collaborative care – across maternity, cardiac, Aboriginal and primary health – are all so important. Vicki Wade [right], who is the cultural lead of RHDAustralia (RHDA), urges all Aboriginal and Torres Strait Islander women to know their heart history. “Ask your mums or grandmother if there are any heart problems that they know. This is very important for our young ones who are planning to have children”.
Doing the maths and changing the workforce landscape
Apart from addressing the “causes of the causes” that lead to RHD, a maternity workforce that reflects our Australian population is needed. About 3% of the overall Australian population are Aboriginal or Torres Strait Islander. Yet only 1% of Australian midwives are Aboriginal or Torres Strait. There is currently only one Aboriginal obstetrician in Australia who we are aware of. The work being done by groups such as the Rhodanthe Lipsett Indigenous midwives fund, universities, others – and the Aboriginal and Torres Strait Islander women and men themselves who work in maternal health – is helping change that landscape. Aboriginal midwife Marni Tuala in a recent RN AWAYE interview joined the dots in talking about Aboriginal midwives in Australia and why it matters. Having an Indigenous workforce that is a truer representation of our country works for all of us. It supports a safer experience for Aboriginal women to have their babies. And it helps promote the dialogue between Aboriginal and non-Aboriginal about what optimal models of care Aboriginal maternal and child health can look like. All important aspects of getting it right, particularly for pregnant mums with RHD: a preventable disease that should be part of history.
Further information and resources:
- Find out more about the RHD in pregnancy study here or download this flyer.
- See also RHDAustralia for a bundle of resources. RHDAustralia is currently coordinating an initiative to introduce RHD in pregnancy into the midwifery curricula.
- Find out more about the Rhodanthe Lipsett Indigenous midwives fund.
- Download the interview with Marni Tuala on Radio National AWAYE.
- Rheumatic fever and RHD (for under 35s) is a notifiable condition in NSW. See http://www.health.nsw.gov.au/Infectious/rheumatic/Pages/default.aspx
- * NHMRC #1024206, #11332944
- Banner photo from Wikipedia – Micrograph showing an Aschoff body as seen in rheumatic heart disease.
Previously on Nurse Uncut: