Fuamatala Lui was getting her three young children ready for the day when she looked up and noticed her daughter acting strangely. Video / NZ Herald
It was an odd thing for her mum to notice during the mad morning rush - but it would prove to be the first sign something was not quite right for 4-year-old Natalia Lui.
Fuamatala Lui was getting her three young children ready for the day when she looked up and noticed her daughter acting strangely.
“She couldn’t hold her toothbrush. I looked at her and I said: ‘Are you okay? Is something wrong with your hand’?”
‘Her movements don’t look right’
Lui initially brushed it off; thinking her daughter was still feeling sleepy that morning. But as she helped her to get dressed, her little girl kept falling over.
“I just kept watching her and I knew it wasn’t her. I said to my husband: ‘There’s something up with her. Look at her - her movements don’t look right’.
Natalia Lui's mum Fuamatala noticed her daughter was struggling to hold things. Photo / Sylvie Whinray
“I sat with her after I made her breakfast and was just watching her, to see her hand movements. She was eating her cereal and couldn’t hold her spoon. She was using her left hand to try to adjust the spoon in her right hand.
“She dropped her hand to her side - and I called the doctor.”
Young Natalia was seen by a doctor later that morning. She had checks carried out and all vitals came back clear, her mum said.
They were given Pamol in case she developed a fever and told that if things got worse for any reason, go straight to the hospital.
“I monitored her that day, as I was working from home at the same time,” Lui says.
Natalia Lui, 4, spent a month in hospital after being diagnosed with rheumatic heart disease.
“I gave her colouring pencils and a book to draw on - and she couldn’t do it. I got really scared because I kept calling out to her. She just had an absent look.”
By early afternoon, Fuamatala and her husband Mandy Lui and their daughter were sitting in the emergency room at Middlemore Hospital’s KidzFirst.
A series of tests were carried out - including X-rays, MRI, bloods and an echocardiogram heart test - and there were initial fears Natalia was suffering from a neurological issue.
Natalia Lui, 4, is recovering after being diagnosed with rheumatic heart disease after getting rheumatic fever. Photo / Sylvie Whinray
After about a week of tests, it was revealed the abnormal movements she had were signs of sydenham chorea - jerky twitches and uncontrollable movements of the hands, arms and shoulders and a somewhat rare symptom of rheumatic fever.
The autoimmune disease is often caused by untreated or partially treated strep throat and can lead to rheumatic heart disease - when one or more of the four small heart valves is damaged.
Sore throat not the only symptom
Pacific and Māori children are 80 times more likely to get acute rheumatic fever than other ethnic groups in New Zealand, according to 2021 figures.
“The doctor asked us if we’d heard about rheumatic fever before and I told her: ‘Yeah, we hear about it on the radio, but we don’t know about it’. We know that if someone’s got a sore throat, you get it checked out.”
Natalia, however, had never complained of a sore throat and only developed a cough later that same week.
“She was diagnosed with acute rheumatic fever and rheumatic heart disease. She had two heart valves damaged.
“They explained to us that rheumatic fever starts with strep throat. Natalia didn’t have symptoms of a sore throat ... and that was one of the questions that we did ask the doctor about - why it didn’t show as her having a sore throat first. They told us it can be minor.”
Lui said the fact her daughter had not had a sore throat was something she wanted people - particularly Pacific and Māori families - to make note of.
And particularly because much of the advertising on the radio and posters at doctor’s clinics stresses the importance of looking out for a sore throat.
Fuamatala Lui pictured with her daughter, 4-year-old Natalia. Photo / Sylvie Whinray
“Rheumatic fever is not always about having a sore throat. It can be other things, like what our daughter went through.”
During their month-long stay in hospital in June, she met an older Samoan woman in the hospital, whose 12-year-old son had just finished heart surgery after contracting rheumatic fever. Like Natalia, he never had a sore throat, but had complained to his mother one day of having sore leg joints.
“She said to me that if she knew that was one of the symptoms for rheumatic fever, she would’ve taken him to the doctors. But she didn’t know - she just thought it was from playing around at school.
“Two days later, he couldn’t walk and they had to carry him to the car.”
Health NZ’s Deborah Woodley said public awareness campaigns focusing on the prevention and symptoms of rheumatic fever are underway to improve engagement - particularly with Pasifika and Māori.
She said it was important for communities to be aware of the importance of getting a sore throat checked.
“It is also important for whānau and communities to be aware of the symptoms and signs of rheumatic fever, such as sore joints and unusual movements and the need to seek urgent medical attention.”
For the Luis, life has changed since their daughter’s diagnosis.
Natalia will now get a penicillin injection every 28 days for the next 17 years - until her 21st birthday. It is to make sure she has enough penicillin in her body to help prevent her from getting strep throat or rheumatic fever ever again.
Fuamatala Lui acknowledges her motherly instincts for helping figure out Natalia’s condition and urged parents to listen to their instincts if they feel something is not right.
“I know my daughter and I know what she’s like. Every parent has that instinct - use it.”
Vaimoana Mase is the Pasifika editor for the Herald’s Talanoa section, sharing stories from the Pacific community. She won junior reporter of the year at the then Qantas Media Awards in 2010 and won the best opinion writing award at the 2023 Voyager Media Awards.
