Margie’s daughter was only eight years old when she was diagnosed with rheumatic heart disease. She shares her journey of being mother to a child with RHD, and what she thinks is needed to really tackle RHD in Australia.
Tell me about your daughter Liana’s experience of RHD. How long ago was she diagnosed?
In the days leading up to Christmas 2012 Liana, then 8 years old, had a sore foot and fevers. She couldn’t weight bear so I took her to the hospital. She thought she may have injured herself playing with siblings. An x-ray was done and her foot examined with no obvious injury. I had been giving her Panadol for pain relief and was advised to give her Nurofen. She was given some crutches and we went home. After a few doses of Nurofen she was up and around again with no pain. I was advised to have her reviewed by GP after a few days.
When Danila Dilba re-opened in the New Year I brought Liana I to see a GP. She thought it could be acute rheumatic fever, and rang the hospital Pediatric consultant and was advised to get bloods. The blood results showed infection and Liana was quickly referred to see Dr Bo, the Paediatric Cardiologist. She ordered some more bloods and done an Echo, which showed no damage. Liana was started on a 12 month regime of monthly LA Bicillin.
When we returned for her review 12 months later we were told she will stay on the injections until she is 21.
Why did you suspect she had RHD?
I didn’t suspect at all that she had RHD. It was really picked up by the Registrar at Danila Dilba Health Service.
How is Liana doing now? How does she go with her monthly injections?
Liana is doing well now. She reminds me when her injections are due. I find it difficult to keep track of the time but she remembers. We then have to work around her schedule as she has school and sports after school most days. We try to get into the clinic on an afternoon she has free so she can rest that night. Her siblings had to learn to stay away and not bump her.
The first six months was difficult she found the injections painful during and for a few days after. And would be upset. If she had a bad experience it would make her anxious for the next injection.
She finds it good to have an ice pack on the site before and after the injection to relieve some of the pain. She had a lot of education about why the injections are important from Dr Bo, and Aboriginal Health Practitioners Maida and Cynthia at Danila Dilba. I think getting this education from other people and having them build a rapport and relationship with Liana made it easier. Initially I was stressed about how I was going to get her to have the injections every month, as I know they are very painful. So having the support of others was important. It wasn’t just me trying to tell her about RHD. As she gets older she has other questions and she knows she can ask anything when she see’s clinicians for her needles. She has now begun getting the injections without having to hold on to me, after 5 years she is confident to do it on her own.
Does anyone else in your family have RHD?
I have family on my Mum’s side at Wadeye, a remote community south west of Darwin. A cousin and some nieces and nephews that have RHD and are on monthly injections. My cousin is now in her early 30’s and has been on LAB since she was a child.
How common is acute rheumatic fever and RHD in the communities that you work in?
We have nearly 300 clients on our files with a RHD diagnoses. They do not all come here for regular follow up though. We get many transient clients, people that come and get their injections with our service if they are visiting Darwin. It is a common thing we see in our clinics here.
What role do you think research can play in ending RHD?
I think research can play a very important role in ending RHD because it is a disease that should not be occurring in this day and age in Australia. With research there can be a better understanding of the disease – how and why it affects people – and looking at treatment to improve adherence, and how to prevent the disease occurring in the future.
Many people living in Australia are unaware of what RHD is, and how it’s affecting communities. What do you want these people to know about RHD?
Most people in Australia with RHD are of Aboriginal and/or Torres Strait Islander background, so I think the high prevalence highlights the issue of poor living conditions. There needs to be improvement in housing, education and access to health services for this to improve.