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Rheumatic Heart Disease Australia

RHD Resouces

Working with women who have rheumatic heart disease

This article was first published in the Australian College of Midwives quarterly magazine, Australian Midwifery News

The Champions4Change program is a culturally safe support program for people living with acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in Australia. It is entirely designed and led by Aboriginal and Torres Strait Islander peoples and communities.

Zahri Sultan is a 28-year-old woman from the Luritja (Kings Canyon) and Kaytetye (Barrow Creek) tribal groups based around central Australia, currently living in Darwin, Northern Territory. Zahri has two daughters aged 8 years and 15 months.

Renee Highfold is a 33-year-old woman from the Arrentre (Alice Springs) and Wirringu (Ceduna, S.A) tribal groups. She is living and studying (Primary Health Care) in Adelaide since her diagnosis with rheumatic heart disease (RHD) in 2017. Renee is a mother of two boys aged 17 and 14 and is currently 28 weeks pregnant with her third child.

Zahri and Renee had a conversation at an ACM conference with Geraldine Vaughan, one of the lead authors of the Women and Girls chapter of the 2020 ARF/RHD Australian Guidelines. Here’s a little of their discussion…

Zahri and Renee’s lived experiences highlight key points about women with RHD.

Zahri was diagnosed with RHD before she became pregnant; however, the increased workload on the heart during pregnancy can make undiagnosed RHD symptomatic.

Renee had 2 children by the time she was diagnosed and felt like she was delivered a ‘death sentence’ when she realized she required secondary prophylaxis injections every 3-4 weeks for the next 10 years.

Babies of mums with RHD are at greater risk of stillbirth, prematurity and complications.

Renee found the programs at the hospital were frustrating, once waiting “4 hours in the assessment unit for an echo which could have been completed in 5 minutes by the Aboriginal Health Program”. She now assists at the hospital with education sessions about best practice care for women with RHD and has a good relationship with the midwife at her local clinic.

Pregnancy and childbirth should be a joyous time, but the burden of RHD can make it feel dangerous and threatening.

Zahri’s first pregnancy was managed with bedrest during labour, which ended in an emergency caesarean section. “I was uncomfortable lying on my back, I was so scared, and after 24 hours in labour, suddenly everything happened so fast. I was worried my baby would have RHD. 8 years later, my next baby was born by caesarean, and I have never delivered naturally.”

With early diagnosis and appropriate care, most women with RHD can safely conceive and give birth.

Renee’s story highlights the importance of respectful relationships with caregivers. Once empowered, she felt she had been previously deceived by the lack of information shared with her. This has changed her attitude to self-care and to her pregnancy. “The most important thing about caring for people with RHD is giving them choices – about which site to receive their secondary prophylaxis injections and which health service to attend. At first, I got confused by different information from different health services. But now I go between two health services to create a good network.”

“I like my appointments with the midwives at the local clinic and continue in a shared care arrangement with the GP”.

What are the two most important things you wished you had known earlier about RHD, especially in relation to pregnancy?

Zahri: “As much as I must look after my health, I must make sure my kid’s health is well looked after so that they do not end up with rheumatic fever.”

Renee: “That all it takes is just one acute rheumatic fever recurrence to cause irreparable damage to my heart valves, therefore potentially changing my status from mild to moderate or severe [RHD].”

What are the two most important things you wished your midwife knew about RHD in women?

Renee: “That I needed regular heart scans over the gestational period.”

“Midwives should always use the ARF/RHD guidelines as a first base reference point and then approach the designated control programs should they need further information regarding best practice.”

“The points raised by Renee and Zahri highlight critical issues of care for midwives,” Geraldine commented. “Multidisciplinary, community-centred care that is age appropriate, encompasses reproductive health as well as cardiac and other health care and continues through the lifespan, is essential for women and girls with ARF/RHD. Early diagnosis and appropriate care are so important in avoiding complications and preventing worsening RHD. Asking the right questions at the booking visit, early cardiac review and appropriate care give women the greatest chance to have uncomplicated births and healthy babies. It also helps high-risk women (such as those on anticoagulation therapy) get the proper care and make informed decisions. Midwives are central to this process.”

For more information about secondary prophylaxis, management of RHD and care pathways in pregnancy, see:

The 2020 Australian guideline for prevention, diagnosis and management of acute rheumatic fever and rheumatic heart disease (3rd edition), especially Chapter 12: Women and girls with rheumatic heart disease: 

RHDAustralia offers free accredited E-learning programs available from the website: Women and girls with RHD and Women and girls with RHD