“We need to continue to work together – researchers, communities and families – to change the story of RHD in the lives of our children, families and communities that are still affected and living with the impact of RHD on a daily basis.”
My name is Joaquina de Sousa Maurays, I am a General Physician and I work at Maluk Timor Organization in the Rheumatic Heart Disease Program.
Rheumatic Heart Disease (RHD) is a chronic heart disease involving permanent damage to the cardiac valves by rheumatic fever. Some people with RHD need surgery.
Finding out that you need a heart operation is frightening for most people, but having to travel to another country – when you have never been outside your own country nor traveled in a plane is worrying and stressful. However, there is an Australian NGO called East Timor Heart Fund (ETHF) dedicated to providing life-saving heart surgery for young people, and this is where I come in.
Recently, I was lucky to act as an escort to four women to Australia to under-go heart surgery to repair their heart valves, with the ETHF. I found myself with four very nervous women who were about to embark on a life-changing experience: Maria Belo, Artimisa Pereira, Martinha Alves, and Maria Lemos. These women were all suffering from RHD; they had never left the country, they had never been on a plane.
In Timor-Leste, we have limited facilities to undergo this important lifesaving surgery, which is why we headed over to Sydney for their intervention of surgery. My job was to be an: escort, translator, family friend and emotional support because their family not accompanying them. As well as being a medical doctor, should anything happen, I would be there on call. It was a big task, and not my first time.
Australia is such a big country, and for these four women – everything was new. Metal detectors, collecting luggage, flying for long hours, bustling airports, public transport, even airline food! Everything many people take for granted; all this and then heart surgery. New environments, new culture, and especially food; it was exciting and frightening, it is easy to get lost in a busy city like Sydney arriving at night and it was cold.
Maria de Fatima Belo is a 40-year-old mother of six – from Quelicai in Baucau Municipality. I’ve been living a long time with RHD, and I was at a point I couldn’t even look after the children. When I heard about the opportunity for surgery in Australia to save my life, I was so happy and thankful. But I also was full of fear and worried about the surgery. And I was in a city that was almost six times the population of my entire country; how was I going to survive in such a big city. It was all very surreal.
Artimisa Cristina Ximenes Pereira is 29 years old and she is from Baucau; has one child, she also had been living with RHD for a long time. Every month I have to hospital to get Benzatin Penicillin injection. I was much worse when I was pregnant; my heart was very weak which made the delivery almost impossible and I had to have a Cesarean. Despite her serious illness, Artimisa had her first baby successfully – but it was a high-risk pregnancy and she was very unwell throughout. While I was scared to go to Australia and scared to have surgery – I knew it was the right thing to do, as I know it will save my life.
Martinha Soares Alves is 30 years old, is also from Baucau, and has two children, but can’t work because of her heart condition. I was not allowed her to look after my children because I was so unwell. I had a very severe Rheumatic Heart Disease, and sometimes I had to travel to the National Hospital in our capital (Dili) to get additional medicine to keep me alive. Since I had the surgery, I can look after the children and even do some of the housework again! I feel so relieved, happy and very thankful to God to ETHF for save her life, and to Dr Joaquina for helping me through the travel and surgery. I know how lucky I was to have the surgery, as I know others who also need it, do not have that opportunity.
Maria Serenia de Fatima Lemos is 18 years old, lives in Gleno, Ermera Municipality and was diagnosed with RHD in 2019. Among them, Maria was the youngest patient and has severe RHD with complications. She has six brothers and sisters and while she graduated from high school, she couldn’t start university mainly due to her illness. I was always finding it hard to breathe properly – and I was finding it hard to do things I used to do; I was really stressed. I went to the clinic and they suggested to be tested for RHD – it was positive. Medication helped my condition to settle down a little but the surgery has changed my life. I feel like things are getting back to normal and I want to continue with my studies and go to university. I want to be someone who can do something good for my country as well as my family.
Being a doctor in a country with a limit resources is a very difficult; being a patient escort is great for so many reasons. While I can be a support for the patients, I also learnt how to manage the patient patiently and how they work with the patient.
I hope in the future we can have good health system in Timor-Leste which includes being able to prevent anyone, especially children, from Rheumatic Heart Disease.
Working with Maluk Timor and our RHD Team – we are really raising the profile of RHD – the more people know, the more we prevent or at least have an early diagnosis and early treatment. We have to work hard to end RHD in our country, because every time we see young children present to the hospital, it breaks my heart as there is no cure.
Story by Dr. Joaquina de Sousa Maurays – Maluk Timor RHD Team
