“There aren’t enough words to say thank you.” That's what paediatric nurse Teresinha da Costa said after her life saving heart procedure at Royal Melbourne Hospital.
Teresinha is now home, reunited with her nine-month old son, and well enough to return to work at the Guido Valadares National Hospital in Dili, the capital of Timor-Leste.
Teresinha had a technically complex procedure at Royal Melbourne Hospital on 13 April 2016 to repair a congenital defect in her heart.
East Timor Hearts Fund honorary medical adviser Dr Noel Bayley said Teresinha, 28, suffered from patent ductus arteriosus (known as PDA), an abnormal connection between the large vessels in the chest near the heart. In a developed country this would usually be diagnosed and fixed in infancy.
“It causes enormous strain on the left ventricle, the heart’s main pumping chamber, and this will eventually cause it to fail,” Dr Bayley said.
“Teresinha has already had clinical heart failure in the past. Her outlook without this procedure was very grim.
“Unfortunately, while health facilities in Timor-Leste (East Timor) are improving all the time, currently it has no specialist cardiac facilities, which means overseas treatment is the only option for patients like Teresinha.
“As a skilled specialist nurse Teresinha can make an important contribution to the future of her country. All of us at East Timor Hearts Fund are delighted that we have been able to help give her that opportunity.”
East Timor Hearts Fund is the only medical aid charity dedicated to providing life-saving heart surgery in Australia for young people from Timor-Leste. Since 2010 it has conducted a dozen screening clinics in Timor-Leste and provided surgery or procedures for more than 30 patients, aged as young as 11.
Interventional cardiologist Dr Will Wilson said he was delighted with the success of Teresinha’s PDA (patent ductus arteriosus) closure, which was done using a high-tech, expandable plug-like medical device.
“The PDA was at least twice as large as those we normally see, and at the upper limits of what we can close with devices, so it was a significant challenge for the medical team,” Dr Wilson said.
“We managed to close this defect without open-heart surgery, using a self-expanding cardiac plug made of Nitinol (an alloy of titanium and nickel) with polyester patches sewn inside.
“This was delivered via a three millimetre tube inserted into the femoral vein, at the top of the leg. The large size of Terasinha’s defect meant we needed to use a different plug to that normally deployed.
“The procedure was uncomplicated and Terasinha has made an excellent recovery. A cardiac ultrasound the day after the procedure revealed only a small amount of residual flow across the PDA. We would hope she notices a significant improvement in her symptoms, and closure of the duct will certainly lead to an improvement in her life expectancy.”
Teresinha said her heart disease had made her breathless and dizzy and left her unable to work or have more children.
“I am feeling so much better. I’m looking forward to getting back to nursing, but the most important thing is looking after my six-month old son. He is the only son that I have and I love him so much,” Teresinha said.
“East Timor Hearts Fund is such an amazing organisation. There aren't enough words to say thank you. All we can offer is pray to God that you will continue to do the amazing job you are doing.
“Thank you also to all the medical team and nurses at RMH, donors and sponsors, Bairo Pite Clinic, all the volunteers and everyone involved. Obrigadu barak (thank you very much)."
Rofina Quelo, 14, arrived in Australia in November 2015, critically ill and weighing only 32 kilos. Although her passion was reading books, her heart condition left her so weak that she could no longer walk to school. She spent most of her days in bed.
East Timor Hearts Fund Honorary medical adviser Dr Noel Bayley assessed Rofina in Timor-Leste and confirmed she had severe mitral stenosis, caused by childhood rheumatic fever, an inflammatory disease that damages the heart tissue.
One of Rofina’s heart valves was almost blocked, and her heart was failing. Without immediate medical assistance her outlooks was very dire, Dr Bayley said.
East Timor Hearts Fund arranged treatment for Rofina at one of Australia’s leading cardiac services, MonashHeart in Melbourne.
“For a poor family from a remote village in Timor-Leste the opportunity for treatment by leading experts at a world-class institution like MonashHeart is really a miracle,” Dr Bayley said.
Although it was hoped that Rofina would be able to have a less invasive mitral balloon procedure, more detailed examination on her arrival in Australia showed this would not be possible.
In November and December 2015 Rofina endured three open heart surgeries, as the medical teams worked to stabilise her condition.
Throughout, East Timor Hearts Fund’s volunteer patient support team provided additional care, encouragement, Timorese food and conversation.
Finally, after a long stay in intensive care, extensive rehabilitation, and period of convalescence in the community, Rofina was given a clean bill of heart health. She returned home in March 2016, along with many books and gifts given by well-wishers, and was looking forward to going back to school.
“Rofina impressed everyone with her fighting spirit. She never gave up and neither did we. We’re calling her our Wonder Girl,” said board chair Ingrid Svendsen.
“It’s incredibly rewarding to see a young girl given a second chance in life and an opportunity to reach her potential.”
Dr Bayley thanked MonashHeart and Monash Health for their extraordinary efforts to assist Rofina, and also acknowledged the Australian donors who had contributed.
“There are many more young people like Rofina – our waiting list is long and growing. With the continued support of the Australian public and hospitals we can help these patients.”
Jeca Pereira, 11, is the youngest patient assisted by East Timor Hearts Fund.
The grade four student, who travelled to Australia with his mum Marquita, had a technically complex mitral balloon procedure at MonashHeart in Melbourne in September 2014.
He is believed to be the youngest person in Australia to have the mitral balloon procedure.
Increasing pain, breathlessness and fatigue meant Jeca had not been able to go to school or enjoy other normal childhood activities.
“Now I am hoping to do the things I used to do, like playing with my friends and going back to school. I would like to be a doctor one day. That is my dream!” Jeca said.
East Timor Hearts Fund board chair Ingrid Svendsen praised Australian supporters for rallying to help Jeca. Professor Richard Harper, MonashHeart Emeritus Director of Cardiology and the medical team assisted pro bono, MonashHeart and Monash Health donated their facilities and services and sponsor Toll Remote Logistics paid for airfares. Individual donors helped meet other expenses.
“There is a lot of gloom and doom in the world today but we are providing a way for Australians to make a real difference for our next door neighbours, the East Timorese, who have no other way to access this sort of medical care,” Ms Svendsen said.
“This is a dream come true for Jeca. He has a healthy life ahead of him. He can go back to school and work toward his dream of becoming a doctor.”
Professor Harper, an Australian pioneer of the mitral balloon procedure, said he had never performed it on a patient so young and so small. The team were not certain that the catheter – inserted with a special balloon that is inflated to widen the heart valve – would fit in Jeca’s femoral vein and made contingencies for conventional open heart surgery if needed.
“We are all thrilled that we’ve been able to help Jeca. The team and I will get a lot of satisfaction from knowing he can return to East Timor healthy, and we are all very touched that Jeca says he wants to be a doctor. We consider that a lovely tribute,” Professor Harper said.
In 2014 East Timor Hearts Fund received an emergency request to assist 14 year old Ana Clarita, whose heart was failing.
Darwin paediatric cardiologist Dr Bo Remenyi raised the alarm about Ana Clarita Freitas after examining her during a medical mission to Timor-Leste (East Timor).
Dr Remenyi, who undertakes regular paediatric cardiology trips to Timor-Leste for Rotary Oceania Medical Aid for Children (ROMAC), said Ana Clarita's heart was failing and she had little time without immediate medical assistance.
"Ana Clarita has critical mitral stenosis, a heart valve condition common in Timor-Leste that is caused by childhood rheumatic fever, an inflammatory disease that damages the heart tissue.
"She is likely to have had heart disease for a long time and is very frail. She weighs only 24 kilos.
"One of her heart valves is almost blocked and unable to pump blood effectively. As a result she is very weak, breathless and dizzy. Without intervention her heart will fail, and that could happen at any time."
East Timor Hearts Fund immediately rallied support and within days arranged for eminent cardiologist Professor Richard Harper of MonashHeart to treat Ana Clarita. The fund also arranged transport, accommodation, warm winter clothing and other needs.
Sponsor Toll Remote Logistics for flew Ana Clarita to Australia, and MonashHeart for performed the heart valve procedure pro bono.
"Ana Clarita's case is distressing and heart-wrenching. By our western standards it seems inconceivable that a child this young could be dying of heart disease, yet that is the reality in Timor-Leste where patients with heart conditions go undiagnosed and untreated because of a lack of medical services," Dr Bayley said.
Ana Clarita's procedure was a success, and within hours she was up and walking around the ward, the first time she had walked without pain and breathlessness in years.
When Dr Bayley examined her in Dili a month later, she had already gained several kilos and was back at school.
High school student Leonito Carlos, 18, is back at school and enjoying good health for the first time in many years following life-saving heart surgery in Australia in June 2013.
Leonito, 18, underwent double heart valve replacement surgery at The Royal Melbourne Hospital after his life-threatening condition was identified by East Timor Hearts Fund's volunteer medical team at a screening clinic in Dili in early 2013.
We brought Leonito to Australia for treatment with assistance from sponsor Macquarie Telecom, which provided financial support for his operation.
Following the surgery, Leonito said he was enjoying being able to breathe normally for the first time in years.
“Because I have heart disease, it made me feel stressed and I don’t feel happy in my life. Every day I feel breathless. I had chest pain when I took a breath, shortness of breath and sometimes I felt like my heart was going to explode,” Leonito said.
Cardiothoracic surgeon Marco Larobina, from The Royal Melbourne Hospital, said the surgery would be life changing for Leonito, whose condition results from childhood rheumatic fever, which is common in developing countries like Timor-Leste.
“Without surgery, Leonito had very limited life expectancy due to damage to both of his heart valves. His surgery was a complete success and now he can look forward to finishing school and leading a normal life,” Mr Larobina said.
Warrnambool cardiologist Dr Noel Bayley, East Timor Hearts Fund’s honorary medical adviser, said Leonito’s prospects were grim without immediate surgery, which is unavailable in East Timor.
“In East Timor there are many, many young people with the hearts of 80 year olds and the lack of diagnostic and specialist cardiac care facilities means most go undiagnosed and untreated.
“One day East Timor will have a strong health system, but until then, East Timor Hearts Fund is bridging the gap by mobilising donors and medical supporters in Australia to help critical cases like Leonito.”
Dr Bayley, who has undertaken pro bono work in East Timor for more than a decade, examined Marciano while undertaking clinics in Dili in August 2013, and confirms he is now in perfect health.
Dr Bayley thanked Mr Larobina and The Royal Melbourne Hospital for giving Leonito “a second chance at life”.
Grade five student Arminda Soares had perhaps a year to live when her desperate condition was identified by East Timor Hearts Fund's volunteer medical team at a clinic in Dili in April 2013.
The 12 year old, who travelled to Australia with her older sister, underwent a life-saving heart valve procedure at MonashHeart in May 2013. She is believed to be the youngest patient in Australia to have the mitral balloon procedure.
"Because I have heart disease, I am losing weight and breathless. I cough, have no appetite and I have chest pain. It all makes me feel sad," Arminda said before the operation.
"When I am well again I will continue at school and play with my friends at home and at school."
Airfares for Arminda, and fellow patient Maria Filipa, 33, were paid for by public donations. The medical team, including leading surgeon Professor Richard Harper donated their services.
East Timor Hearts Fund's volunteer medical adviser, Dr Noel Bayley, said that without help, the outlook for Arminda was grim.
"There are many young people in East Timor with serious heart disease caused by childhood rheumatic fever. Scarring caused by the condition means these young people have the sort of heart disease I typically see in my 80 year old patients.
“In Australia it is virtually unheard of for a 12 year old to have life-threatening heart disease."
Professor Harper, an Australian pioneer of the mitral balloon procedure, said he had never performed it on a patient so young and so small. The team were not certain that the catheter – inserted with a special balloon that is inflated to widen the heart valve – would fit in Arminda’s femoral vein and made contingencies for conventional open heart surgery if needed.
“I am delighted that Arminda’s procedure went well. The team and I get a lot of satisfaction from knowing she has returned to East Timor healthy rather than as a little girl burdened before her time with debilitating heart disease,” Professor Harper said.
Arminda and Maria receive ongoing medical checks from East Timor Hearts Fund and are expected to be able to live normal lives.
Flavia Guterres was 19 when Dr Bayley examined her at a clinic in Dili in mid-2010. It was clear that Flavia was in trouble. She was so weak and breathless and a cardiac ultrasound confirmed mitral stenosis, narrowing of a valve that would likely lead to congestive heart failure.
In October 2010 cardiologist Professor Richard Harper and his team at MonashHeart in Melbourne performed a procedure on Flavia to insert a balloon through a catheter to expand the faulty heart valve.
The effect was astonishing, and within a couple of days Flavia was out shopping like a normal teenager.
“I cannot express how happy I am to have this opportunity,” she said at the time.
“Before this operation, I was so weak I could not walk more than a few steps, and the doctors told me that I did not have much longer to live.
“Now I am looking forward to getting back to East Timor and finishing my high school certificate so that I can fulfil my ambition of becoming a nurse.
“I won’t waste this opportunity. I have been given a second chance at life and I intend to make the most of it.”
Dr Bayley regularly checks on Flavia during his trips to Dili, and confirms she is doing well. Since returning to East Timor Flavia has gone back to school and is on her way to realising her dream of becoming a nurse.
Ursula Soares, 17, had only months to live when she was brought to Australia for treatment in 2010.
Like Flavia, Ursula suffered from mitral stenosis, a narrowing of the heart valve probably caused by scarring resulting from childhood rheumatic fever.
Ursula was desperately unwell, weak and lethargic and unable to do virtually any activity that a regular teen might, including going to school.
In December 2010 cardiologist Professor Richard Harper and his team at MonashHeart in Melbourne repaired Ursula’s faulty heart valve.
“Now that I’m well again I look forward to returning home and re-starting my studies,” a beaming Ursula said after her operation.
“When I was 11 my heart condition meant I became too tired to walk to school, and so I had to leave.
“Now I would like to finish school and study medicine, so I could help other people, although I know that my family does not have the ability to support me financially.”
Dr Bayley has examined Ursula during his regular trips to Dili. She is now in good health, and has returned to school with enthusiasm.