Bringing life-saving surgery to Tonga – Amelika’s story

From the outside, Amelika* looks like any other 14-year-old girl. But on the inside, Amelika’s heart is failing.

When she was 12 years old, Amelika would lose her breath walking from the living room to her bedroom. She was feeling weak and lethargic. After going to the doctor, Amelika was diagnosed with pneumonia and was prescribed medication. But she continued to feel unwell.

For two years, everyone around Amelika treated her differently. At home, her parents treat her differently from her siblings. At school, her teachers and peers react to her differently than other children. Amelika even labels herself as a patient.

“I want to be able to run and do sports like a normal girl,” Amelika says.

It turns out Amelika doesn’t have pneumonia. She has rheumatic heart disease (RHD). In February this year, an Open Heart International team visited Tonga and screened Amelika. It was discovered that her faulty aortic valve irregulates blood flow causing severe leakage around the damaged valve. The doctors call it ‘severe regurgitation’.

If Amelika doesn’t have her aortic valve replaced it will become weaker and more dilated, straining her left ventricle to the point of heart failure. Without help, Amelika will die.

1 in 10 children under the age of 14 in Tonga have RHD like Amelika. That’s almost 4,000 children who aren’t sure what tomorrow has in store for them. And, while treatment for the condition in places like Australia is relatively easy and common, things are very different in Tonga.

In Tonga today, Amelika’s condition is commonly treated with prophylaxis. Others who suffer like her are given a monthly dose of Benzathine Penicillin G. The antibiotic helps fight the heart infections that are common in those whose RHD has not developed past the mild stage.

The reality is that for most children in Tonga there is little hope of their condition being treated. Instead of heart surgery, they are given antibiotics to prolong their life.

Patients whose RHD is severe can be sent from Tonga to New Zealand or Australia for surgery – but it costs $60,000 AUD per trip. In a country where 1 in 3 children live in poverty, it’s a
price that is simply out of reach.

Yes, the government does try and step in to help, but the cost of one trip like this is equivalent to the annual budget allocation for prophylaxis treatment of RHD in the country. Eventually the choice comes back to – does one person get surgery, while others miss out on their medication; or do other RHD sufferers receive the medication that lets them live, while a patient in severe need misses out on surgery.

“I want to think about life instead of thinking about when I might die,” Amelika says.

Thankfully, Amelika will undergo Aortic Valve Surgery this September thanks to an Open Heart International volunteer team, headed up by Dr Ian Nicholson. The valve she’ll receive (an
Edwards Inspiris Aortic Valve) will grow as she does, meaning it won’t need replacing for 20 years.

With this valve, instead of a mechanical one, Amelika can avoid having to take Warfarin – a drug which can have significant impacts on potential mothers and their children. For the first time,
Amelika can imagine and dream, and have something to look forward to. Instead of thinking about death, she’s able to think about her life.

Thanks to people like you, Open Heart International has been able to perform more than 170 life-saving surgeries in Tonga. But we need your support to bring this life-saving change to more children like Amelika. Please help provide life-saving surgery and give children hope for a healthier future by donating today at ohi.org.au/donate.

*Name changed for privacy