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Living with RHD and managing pregnancy: Zafirah and Livini

08 March 2019
During one of the follow-up visits late in her pregnancy, Livini learnt that she had RHD – that her heart valves were damaged and causing her heart failure.

Livini and Zafirah are both from Fiji and as well as living with rheumatic heart disease (RHD) they also share similar experiences of the challenges of pregnancy for women living with RHD and the importance of close medical support.

Today, on International Women’s Day, both are sharing their personal stories and journeys through diagnosis, sickness, health, pregnancy, and life to spread awareness about the risks pregnancy may pose to women living with RHD.

RHD can make pregnancy and delivery riskier for mothers and babies. However, many women with RHD can have healthy pregnancies and healthy babies with the right medical care. Some women with specific types of severe RHD may need to avoid pregnancy, so access to family planning is important to allow women and their families to make safe choices about having children.

Zafirah was diagnosed with RHD whilst she was still in primary school. At the time, there wasn’t much awareness about the seriousness of RHD and it was not until her symptoms worsened that she started to receive the treatment she required.

“The doctors at the medical centre recognised right away that something big was wrong with me. They showed us my x-rays and we could see that my heart was enlarged. My valves were really damaged, and I was admitted instantly.”

At the age of 13, Zafirah underwent surgery to repair her mitral valve. The surgery went well and as she recovered from the pain and soreness of the operation she started to notice significant improvement in her strength and energy level. After finishing secondary school, Zafirah met her “special guy”, got married and decided to start a family. Throughout her pregnancy, her doctors closely monitored her heart and condition, emphasising the importance of ongoing adherence to her antibiotics and other medications.

Zafirah followed the doctors’ orders throughout her pregnancy and with close management had a normal delivery without complications. She gave birth to a healthy baby girl.

Unlike Zafirah, Livini was not aware of her RHD diagnosis until late in her pregnancy when she ended up in hospital. Her heart valves were damaged so her heart was not working how it should. After her pregnancy, she missed her penicillin injections for a brief period of time, but with the encouragement and support of the clinic nurse, she returned to her treatment and now sticks to her routine.

Livini and Zafirah’s experiences provide valuable insight into the importance of following medical professionals’ advice when thinking about starting a family. Both young women have become active participants in RHD patient advocacy groups in the Western Health District in Lautoka in Fiji and are passionate advocates for raising awareness about RHD in their communities.

They each feel they have a commitment to help other young women so that they too can have the best possible outcomes for themselves and their babies.

Read their stories below:
Living with RHD: Livini’s Story (Managing Pregnancy)
Living with RHD: Zafirah’s Story (Managing Pregnancy)

For more information:
The RHD in pregnancy study (Australasian Maternity Outcomes Surveillance System)

*In collecting these stories of women with RHD and their pregnancies we have sought to honestly represent the reality of our patients’ lived experiences. RHD Action encourages all RHD patients to stay in care and follow their medical professionals’ advice, to achieve the healthiest and safest outcomes for themselves and their babies.