Reprinted from Stuff with permission
Like many kids his age, Takikava Joseph, 14, loves playing rugby: running up and down the field, his heart pumping.
The teen is also living with rheumatic heart disease, after contracting rheumatic fever at just six years old – a condition which kills about 130 New Zealanders every year, and disproportionately affects Māori and Pacific young people.
Takikava and mum Borabora Joseph from Auckland’s Manurewa, are sharing their story to raise awareness of rheumatic heart disease and other heart conditions, as part of Heart Kids’ annual appeal.
One day in 2013, Takikava came home from school feverish, and not “playful”.
Joseph recalls feeling panicked, watching a doctor move his stethoscope from her son’s chest, to his back, to his chest, and back again – in complete silence – before they were sent to hospital.
There, a doctor asked Joseph if she knew what rheumatic fever was: “I had no idea… I was so shocked.”
Rheumatic fever starts with a sore throat, caused by Group A Streptococcal bacteria.
If the strep throat isn’t treated, it can cause rheumatic fever, which can lead to permanent heart valve damage (rheumatic heart disease).
Takikava was in hospital at KidzFirst for six weeks, before spending a further month at Starship Children’s Hospital, where he was “bed-ridden”.
“He would cry, he wanted to go run around.”
In August 2013, Takikava underwent open-heart surgery to repair his damaged heart valve. But the condition has long-lasting consequences, and repeated bouts can make rheumatic heart disease worse.
Every month, until his late teens or early twenties, Takikava will have an injection of antibiotic penicillin to stop further strep throat infections. He also requires annual appointments to check his health.
Last year they were told Takikava was “100 per cent.” Joseph said: “It was such a relief, [the] weight of the world off my shoulders”.
But as he grows, he will one day need the valve replaced – a moment Joseph is “dreading”.
Heart Kids NZ is a not-for-profit organisation dedicated to supporting New Zealand’s ‘heart children’, living with heart conditions.
It has more than 10,000 members, and grows 15 per cent each year.
Twelve babies are born each week in Aotearoa with congenital heart defects, and many others are diagnosed with acquired heart disease.
It provides children and their families with practical, financial and emotional support, including education, training, counselling, specialist equipment and special events.
The Joseph’s are one such family.
Joseph said the support she and her whānau had received from Heart Kids NZ was “amazing”.
They have been able to connect with other families whose children have heart conditions, and Takikava even got to go to Disneyland – his first overseas trip – through the organisation in 2018.
It has been a tough road for Takikava, one his mum hopes others can avoid.
“If your child has a sore throat, get it checked.
“You never know what could happen – the smallest itch could be strep.”